It seems that as events unfold in the wake of the alleged fatal assault of an intellectually disabled man at the Templeton Developmental Center in September, the system continues to fail everyone it was intended to protect.
Last week, Anthony Remillard was found competent to stand trial in connection with the death of Dennis Perry whom Remillard allegedly assaulted while both were in the Templeton Center’s dairy barn. As of this week, Remillard was being held without bail in the Worcester County House of Corrections.
We’ve already written here a number of times about our concern that Remillard was inappropriately placed at Templeton due to his apparently high level of dangerousness, and was not under sufficiently close supervision while there. However, given that Remillard is himself intellectually disabled, it seems to us that the Worcester County House of Corrections is an equally inappropriate place for this 22-year-old man.
Bonnie Valade is the mother of Tony Welcome, a Templeton resident who has himself had some previous scrapes with the criminal justice system and spent time at the same county jail facility now housing Anthony Remillard. She maintains that jail was wrong for her son, who she said was abused there, and will be equally wrong for Remillard. In an email, Valade had this to say:
My son was badly beaten (at the Worcester County House of Corrections) simply because he put his arm around an inmate saying ‘hello.’ The other inmates took everything we brought for him including his radio. He was sexually abused. They put him in a suicide cell just to keep him away from the population. If anyone knows about a suicide cell…it contains nothing not even clothes, only their underwear.
People with intellectual disabilities need clinical and other therapeutic services. They don’t tend to receive those services when they end up in correctional facilities. And they do end up in correctional facilities more often, it seems, than people of normal intelligence.
A recent article on the website Disabled-World.com notes that intellectually disabled people constitute “a small but growing percentage” of suspects and offenders within the American criminal justice system. While they comprise between 2 and 3 percent of the general population in the country, they represent between 4 and 10 percent of the population in prison and an even larger portion of the population in juvenile facilities and jails.
Intellectually disabled people like Anthony Remillard and Tony Welcome need to be in places that provide them with supportive supervision, structure, and security. In many key respects, prisons provide none of those things. It’s hard to imagine that the behavioral issues that Anthony Remillard apparently had that led to the alleged assault on Dennis Perry are going to be dealt with in a positive way where he is now. And the fact that he has been found competent by a judge to stand trial in the alleged fatal assault means he could end up in prison for the rest of his life.
As has been pointed out by others in this case, the system failed Dennis Perry, and now it is failing Anthony Remillard. In both cases, it does not appear that sufficient supportive supervision, structure, or security were or are being provided.
Unfortunately, we see the potential for more of these systemic failures as Massachusetts and many other states continue to cut staffing at facilities such as Templeton, which currently meet strict federal standards of care. We’ve asked for a legislative hearing to examine, among other things, whether a major phase-down in staffing at Templeton in recent years resulted in the apparent failure to adequately supervise Remillard there.
Templeton and countless other facilities like it are being closed around the country in the name of deinstitutionalization. The closure process has not resulted in better lives for everyone, however. We are creating a largely privatized system of care in this country that in many respects provides less supervision, structure, and security than before.
Even the most ardent proponents of privatized, community-based care acknowledge that the community system isn’t working very well. In a recent op-ed piece, the president of the Massachusetts Association of Developmental Disabilities Providers, referred to the “funding disaster that has governed private programs” that now serve most of the people with disabilities in the state. The quality of the care provided by these private programs reflects that funding disaster. The programs are rife with poorly trained and poorly compensated staff and with the consequent problem of abuse and neglect.
And what then happens to the Anthony Remillard’s who are caught up in a system of care that cannot adequately serve them or protect others from them? In more and more instances, they end up in a much worse institutional system — the prison system.
It is now well known that deinstitutionalization of the mentally ill since the 1960’s has led to a continued increase in the population of mentally ill people in the nation’s prison system. We are only starting to realize that the same thing is happening with respect to people with intellectual disabilities.
A state investigative agency has concluded that a Tyngsborough group home resident died last year as a result of having ingested an inedible object, and that there was sufficient evidence to conclude that his death was due to a lack of adequate supervision by caregivers.
The 50-year-old man, who had formerly lived at the Fernald Developmental Center, had reportedly ingested a plastic bag
The March 29, 2012 report by the Disabled Persons Protection Commission, which was obtained by COFAR, concluded, however, that there was insufficient evidence to identify when or how the man had obtained the material he ingested, or whether he was in his group home, day program, or being transported between the two when he ingested it. The report also appeared to place the blame for the lack of supervision on the fact that the man’s plan of care, also known as an Individual Support Plan or ISP, had no requirement that he be kept in sight by staff at all times.
The 50-year-old man had lived in the group home for about a year after having been transferred there from the Fernald Center. According to sources, the man had a history of ingesting foreign objects, a condition known as pica.
The July 6 death of the resident is one of two cases of sudden death involving former developmental center residents, both men in their 50s, which COFAR first reported about last August. COFAR also reported about the case of another man who died suddenly of a blood clot in his lung in a Tewksbury group home on July 24, four days after having been transferred there from the Templeton Developmental Center. An investigation of that death is apparently still ongoing.
Both Fernald and Templeton are among four developmental centers that have been targeted by the Patrick administration for closure.
The March 29 DPPC report leaves many questions unanswered about the Tyngsborough group home resident’s death, including whether the man’s ISP was 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, is redacted in the report.
…the appropriate DDS designee review the above noted additional finding of risk pertaining to (blank) and ISP language and determine what, if any, action should be taken to identify within a person’s ISP those specific items known to be ingested by the person, as a means to minimize or eliminate the risk they pose.
In a third case about which COFAR recently reported, a 51-year-old resident of a Northeast Residential Services home died 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.
The guardians of two intellectually disabled men in their 50s are grappling with the mystery of why each man died suddenly in the past two months in state-operated group homes in the Department of Developmental Services’ northeast region.
Neither guardian yet wants either their name or the name of their ward to be publicly revealed, but both guardians are trying to find out what happened to their wards.
One of the guardians, who I’ll call Anna, said her uncle, who was 54, was healthy when he was transferred on July 20 from his long-time home at the Templeton Developmental Center to the group home in Tewksbury. He died four days later.
In that case, the Chief Medical Examiner listed the cause of death of Anna’s uncle as a blood clot of unknown origin in his lung. But Anna, who is a former nurse’s aide, is not convinced that the listed cause of death is correct. She said the Medical Examiner’s report is inconclusive and the Medical Examiner is still waiting for toxicology results.
Anna said her uncle had had a blood clot in his leg about a year before the move (deep venous thrombosis), but the problem was cleared up. Other than that, the only problems he had was a hernia and he was going blind in one eye. He had worked every day in the dairy barn at Templeton.
After the thrombosis diagnosis, Anna’s uncle had been on a blood thinner called Coumadin, but he was then taken off that medication at Templeton without Anna’s knowledge or consent, even though she is his guardian. It’s not clear, though, that that contributed to his death. There may have been an error involving some other medication that he was taking.
Anna said the staff from the group home had spent about a week at Templeton with her uncle prior to the move, but she is not sure whether any familiar staff from Templeton accompanied him during the transfer to the new residence. She said, though, that her uncle had been active after the move and had told her he was happy and excited to be there. The residence is brand new and is beautiful, she said. Suddenly, four days later, she got a call that he had died. She has no idea how that could have happened.
State Senator Stephen Brewer of Barre has asked DDS to investigate the death of Anna’s uncle, and has asked that further transfers to the Tewksbury group home be halted until the investigation is complete.
In the second case, a former Fernald Developmental Center resident swallowed a plastic garbage bag in a group home in Tyngsborough on June 21 and was taken to Lowell General Hospital, where he underwent surgery. He died approximately two weeks later on July 6. The cause of death is listed as aspiration pneumonia. The 50-year-old man had been living in the group home for about a year.
The man’s sister, who we’ll call Nancy, had been his guardian. She said she is concerned that the staff at the Tyngsborough group home wasn’t properly supervising her brother, who had a tendency to ingest foreign objects, a condition known as pica. “Someone wasn’t paying attention,” she said.
Nancy said she would like to push for a bill in the Legislature that would prohibit staff in group homes from holding second jobs. She heard this was the case in Kevin’s group home, and that there were staff there who weren’t getting enough sleep.
Both of these guardians are dealing with the still fresh grief of the loss of their loved ones. We offer them and their families our deepest sympathy and our condolences. We hope they get the answers they are looking for and will continue to try to help them do so.
We’ve received a report of a second intellectually disabled man who died in the past two months after being transferred to a community-based group home from a state developmental center.
In this second case, the 50-year-old man died suddenly of aspiration pneumonia and a bowel obstruction on July 6, according to the City of Lowell Clerk’s Office, where the death certificate is on file.
According to sources, the man, who had a history of ingesting foreign objects, died after swallowing a plastic shopping bag in the state-run group home. He had reportedly lived in the group home for about a year after having lived for most of his life at the Fernald Developmental Center.
We are withholding his name until we can obtain permission to use it from his guardian.
A staff person with the Disabled Persons Protection Commission said the man’s death is under investigation, but would not comment on the cause of death.
Sources said the staff at the Fernald Center had been aware of the man’s tendency to ingest foreign objects, a condition known as pica, and had watched him closely to prevent him from doing so. We have received reports that the level of supervision in the group home regarding the man’s pica condition was not as high as it had been at Fernald.
We reported earlier this week about another man who died suddenly of a blood clot in his lung in a group home on July 24, four days after having been transferred there from the Templeton Developmental Center. Both Fernald and Templeton are among four developmental centers that have been targeted by the Patrick administration for closure.
In both cases, the men had been transferred to state-operated group homes operated by Northeast Residential Services, a division of the Department of Developmental Services. DDS has refused to discuss or provide any information about these deaths, citing confidentiality and privacy regulations.
We have raised concerns about at least one other incident involving potential lack of supervision in a Northeast Residential Services group home. In that case, a resident of a Norteast Regional Services home in Chelmsford left the residence unsupervised in May and attempted to rape a pregnant woman who lived next door.
State Senator Stephen Brewer of Barre, whose district includes the Templeton Developmental Center, said in an email to COFAR that he had been made aware of the death of the former Templeton resident and has asked DDS Commissioner Elin Howe to investigate it. Brewer said he has also asked Howe to halt further transfers to the group home until the investigation is complete.
We think DDS needs to come out from behind its confidentiality veil and take a fresh look at the level of oversight and supervision in its community-based system of care.
We reported last week that the Patrick administration was refusing to provide any information about — or even confirm — a report that a man in his 50s, who had lived at the Templeton Developmental Center, died four days after being transferred to a community-based group home.
We have since gotten confirmation of the man’s death from the state’s Chief Medical Examiner’s Office and from a newspaper obituary, and have learned that the cause was a pulmonary embolus, or blood clot in his lung. We also learned that a contributory cause of his death was a history of deep venous thrombosis, or a blood clot in his arm or leg.
We are withholding the name of the man until we are able to contact his guardian.
Although the initial report we received was that this man had been healthy prior to his transfer out of Templeton, we now know he had a serious medical condition. That, however, doesn’t fully explain why he died so suddenly after the transfer.
Given that the Department of Developmental Services is citing privacy and confidentiality grounds to avoid discussing this particular case, we have very little information to go on. We did receive a report that this man’s familiar staff at Templeton may not have accompanied him to his new residence and may not have been appropriately involved in the transfer process.
Templeton is one of four developmental centers in the state that have been targeted by the administration for closure by the end of the next fiscal year. In some cases, as we understand it, DDS has been careful to ensure that familiar staff accompany residents who are transferred from these centers as the administration phases the facilities down. But it appears DDS may not have uniform policies or procedures on whether familiar staff are made available to accompany transferred residents to their new locations.
Is it likely that this man would have died anyway, had he continued to live at Templeton? Or did the stress of the move contribute in some way to his death? Was his death the result of a medication error or a lack of proper medication for his medical condition after his transfer from Templeton? Was his death the result of any other negligence in his treatment or care? Was his death due in any way to the fact that familiar staff were not available to him during or after the transfer process?
Moreover, given this man’s medical condition, why were his familiar staff not more involved in his transfer, if it was indeed the case that they were not? He was presumably treated at Templeton for his thrombosis, possibly with anti-coagulants to prevent blood clots. There are a number of potential causes of a traveling blood clot that results in a pulmonary embolus, like the one that caused this man’s death. One cause can be long periods of inactivity or immobility — something which this person’s familiar staff would most probably have known about, but which unfamiliar staff in his new residence might not have known about. How much communication was there between the two staffs about this person’s medical condition?
Is DDS asking any of these questions? We don’t know. We have reported this death to the Disabled Persons Protection Commission in the hope that they will investigate the circumstances surrounding it.
Late last month, we received a report that a healthy, 55-year-old man had been transferred from his home at the Templeton Developmental Center and subsequently died four days later at a community-based group home.
The death reportedly occurred around July 24.
As an organization that advocates on behalf of persons with intellectual disabilities and their families and guardians, COFAR has an interest in getting to the bottom of reports such as this.
Is the report, in fact, true? If so, why would a healthy man die four days after being transferred from one Department of Developmental Services location to another? The answers to these questions could help us better understand the state of care available to all DDS clients.
We posed those questions regarding this reported death in an email on July 27 to DDS Commissioner Elin Howe. In response, we received a message on July 29 from DDS General Counsel Marianne Meacham, which provided no answers and stated that personal and medical information is exempt from disclosure under the state’s Public Records Law. Meacham also cited a provision in DDS’s enabling statute, stating that records of admission and treatment to DDS facilities shall be kept private.
For reasons I’ll get into below, we intend to appeal this denial of information to the state’s Public Records Division. But first, I’d note that DDS’s reaction to our query appears unfortunately to be part of a longstanding pattern on the part of the department of secrecy concerning deaths of persons in its care.
For years, our member organization, the Advocacy Network, has tried without success to obtain notification from DDS of the deaths of former residents of the Belchertown State School and other facilities in order to arrange to pay proper respects to those people. In one case, the Network learned that the cremated ashes of a resident of a vendor-based group home in the Pioneer Valley had sat disregarded on a shelf in the provider’s business office for two years.
In their Spring 2009 newsletter, the Advocacy Network stated that DDS cited confidentiality and privacy regulations as reasons for not providing notifications of the deaths of DDS residents even when obituaries had been published in newspapers.
Edward Orzechowski, editor of The Advocacy Network News, quotes Donald Vitkus, a former resident of the Belchertown State School as saying, “‘No one ever died at Belchertown. People just were never seen or talked about again.'” Although that apparently was the case at this former state facility in the 1950s, one wonders if that situation still prevails in the DDS system.
To be fair, deaths at the Wrentham Developmental Center appears to be handled much differently. COFAR Executive Director Colleen Lutkevich notes that when Wrentham residents die, residents’ guardians are notified and wakes and funerals are held, which are attended by residents, staff, families and friends.
In refusing to provide any informaton about the reported death of the former Templeton Development Center resident, Meacham appears to have cited an exemption to the Public Records Law [M.G.L. Chapter 4 Section 7(26)] that concerns “medical files or information…(and) any other materials or data relating to a specifically named individual, the disclosure of which may constitute an unwarranted invasion of personal privacy.” She also cited DDS’s enabling statute ( M.G.L. Chapter 123B, Section 17), which states that records of admission and treatment to DDS facilities shall be kept private.
We intend to appeal this denial of information because we were not asking for medical files or medical information or for records of admission or treatment. Instead, we are seeking information about the circumstances under which a client in the DDS system died. Secondly, case law, as we understand it, holds that personal privacy rights end when a person dies.
Not only do we and our member families have an interest in learning about deaths of persons in DDS care, the general public has a legitmate interest in knowing about this as well. What if there was negligence or even foul play involved? DDS has to start using common sense and stop hiding behind false confidentiality and privacy claims in these cases.
[NOTE: Last month, we first posted an article here about the importance of the Templeton Developmental Center to three men living there and to their families. Below, I've posted some more information about those men and their experience, which didn't make it into that first blog and which we weren't able to include in the just-released March issue of The COFAR Voice.]
Jimmy Holdsworth kept getting thrown out of community-based group homes and sheltered workshops because his behavior was too volatile and his size and strength were too much for the staff to handle.
For Tony Welcome, community-based programs were ineffective in getting him to stop stealing cars.
Bobby Shepherd’s habit of wandering and trying to make friends with strangers frequently got him into trouble, and community-based programs didn’t provide the structure and supervision he needed.
In each of those cases, the Templeton Developmental Center turned out to be the solution to years of pain and struggle, not only for the men, but for their families. But it’s a solution that will no longer be available to those families or the families of the 103 other remaining residents of Templeton as of the end of Fiscal Year 2013.
The Templeton Center is one of four state-run Intermediate Care Facilities in Massachusetts that the Patrick administration has targeted for closure. The others slated to be closed are the Fernald, Glavin, and Monson developmental centers.
Families and guardians of the residents of the facilities have protested the planned closures and, in the case of Fernald, have filed administrative appeals of the transfers of the residents.
But as many guardians see it, it’s not the closures of the buildings that make up the developmental centers that are at issue; the problem lies in the planned elimination of the federally prescribed level of care provided in them.
At Templeton, for instance, the administration plans to continue to operate three existing residences for persons with intellectual disabilities as community-based programs and to build two additional duplex homes on the grounds. Those residences, however, will no longer be subject to federal ICF regulations governing staffing and care.
Bonnie Valade, Tony Welcome’s mother and guardian, was only able to get her son admitted to Templeton after a long struggle with the then Department of Mental Retardation (now Developmental Services), which had continually contended that Tony was not intellectually disabled.
By the time Tony was 19, he had already been placed in a number of mental health facilities, which had failed to control his impulse to steal cars. His IQ had continually been measured in the 50s, which is well below the DMR requirement that a person have a maximum IQ of 70 in order to receive services.
But when Tony was tested by DMR at at the age of 19, his IQ was found to be 75, making him ineligible for DMR care. Two years later, DMR rejected him again after measuring his IQ at 71, just one point over the cut-off for eligibility. As a result, Tony was placed in a Department of Mental Health facility with eight emotionally disturbed females, which turned out to be inappropriate for him, and later in a homeless shelter.
At one point, with eight different car theft charges pending against him, Tony spent six months in the Worcester County Jail, where he was beaten so badly by another inmate that he had to be placed in solitary confinement for his own protection. Since Tony was accepted at Templeton in 1989 at the age of 24, he has not had any further behavioral incidents, Valade says.
When Tony was in the community system, he had alcohol problem. Today, he suffers a low red blood cell count because anti-psychotic drugs had been improperly administered to him in the community-based system while he was drinking alcoholic beverages. The licensed nursing staff at Templeton understand this, Valade says; but Valade is concerned that once he is back in the community system, drugs will be administered to Tony by direct-care workers with minimal training.
As far as Tony Shepherd is concerned, it will no longer be beneficial for his brother, Bobby, to continue living in his residence at the Templeton Center following a change from ICF-level care there to community-based care. Shepherd, who is Bobby’s guardian, is concerned that under the community-based care model, the intensive clinical and medical supports that have sustained Bobby for more than 50 years will be greatly reduced.
Shepherd said, for instance, that he is grateful for quick action by Templeton’s nursing staff when he was visiting Bobby last fall and noticed while they were having lunch in the cafeteria that he seemed to be feeling unwell. Shepherd asked if a nurse was available, and one arrived within two minutes, checked Bobby’s color and vital signs and then returned with a wheelchair and took him to the nurse’s station.
There, according to Tony Shepherd, further examination showed that Bobby was experiencing a drop in his oxygen level. He was administered oxygen and kept overnight at the nurse’s station for observation. Had he been living in a community-based group home, it is unlikely that a nurse would have been available to respond to the emergency, Shepherd believes.
Shepherd notes that at Templeton, nurses, doctors, and other trained medical personnel are available on a full-time basis to monitor Bobby’s health and administer his medications. A clinical board meets quarterly to evaluate the effectiveness of his prescriptions.
Bobby Shepherd’s intellectual disability stems from low oxygen levels that he experienced at birth. He is verbal, Tony says, but can’t read or write. He has always been nonviolent, but was never easy for his parents to control because of his habit of wandering away from his house. He has a trusting and friendly nature, and has always tried to make friends with total strangers. That would sometimes get him into trouble.
At Templeton, Bobby lives with four other men in a two-story, white farmhouse called Waite Lodge. He’s free to come and go on the Templeton campus, but lately his breathing problems have kept him from venturing out.
Tony Shepherd is worried about Bobby’s future after Templeton closes. At 73, Tony is seven years older than Bobby. “What’s going to happen to him and who is going to look after him if he’s still around after I’m gone?” Shepherd asked. Bobby, he adds, is a “genuine ‘babe in the woods’” who would become “a target of ridicule and abuse [in a less supervised environment] because of his natural but naive belief that everyone is his friend.”
Had the administration not planned to eliminate the ICF model of care at Templeton, Shepherd said he would be a lot less worried about his brother. “The staff is simply not going to be here once this place is switched over to state-operated group homes,” he said. “We’ll be lucky if there are any clinical people left here at all.”
For Jimmy Holdworth’s parents, a social life proved impossible because no community-based residence or program could handle their son, and because he couldn’t be left at home with caretakers other than themselves.
It was only when his parents were in their 60s that Jimmy was finally admitted to Templeton, according to his sister, Judy Holdsworth, who is now his guardian. “At Templeton, he learned for the first time to control himself. It was amazing to me,” she said.
Holdsworth said that in addition to intensive behavioral therapies, the clinical staff at Templeton placed Jimmy on medications to control his impulsiveness and aggression. At first, she said, her parents resisted the idea of placing their son on any medications, but they were persuaded it was the right thing to do when they saw how carefully it was monitored.
“His psychiatrist and nurse always talked with us about it,” Holdsworth said. “We’ve been very satisfied with the way it has worked.” She said her brother is active, alert, and healthy, and “everyone at Templeton can tell when something is bothering him. That’s part of the miracle that occurred with my brother.”