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The state’s attorney general needs to do more than follow and grab COVID media headlines

September 27, 2020 5 comments

Massachusetts Attorney General Maura Healey made national headlines and newscasts with her announcement last week of criminal charges against two leaders of the Soldiers’ Home in Holyoke for allegedly mishandling a COVID-19 outbreak at the facility that led to the deaths of 76 veterans.

We are not second-guessing Healey’s decision to criminally prosecute the Soldiers’ Home superintendent and former medical director in this matter. Our questions and concerns are over the overall investigative goals, or lack thereof, that not only Healey, but Governor Baker and the Legislature have with respect to the COVID crisis in the state.

What happened at the Soldiers’ Home was certainly horrific and potentially a case of grossly negligent management. But the Soldiers’ Home wasn’t the only institutional residential setting in which large numbers of people were infected and have died of the virus.

Our focus has been on the nearly 4,000 staff and residents of residential facilities in the Department of Developmental Services (DDS) system who contracted COVID-19 since April, and the 110 residents and an undetermined number of staff who have died of it.

Yes, Governor Baker has developed what has appeared to be a thoughtful plan over the past several months for testing the general population in the state for the virus, and reopening businesses and other venues as infection rates have declined.

But some groups of people appear to have been overlooked in this process, and we think people with intellectual and developmental disabilities are among them.

We’ve written repeatedly about the treatment of clients in the DDS system with respect to the COVID crisis as if they were an afterthought. Until very recently, there appeared to be no coherent plan for testing the thousands of residents and staff in the system, and huge gaps still potentially remain in the testing program and public reporting of the results.

DDS staff, in particular, have not faced a testing requirement until this month, and even that requirement is rife with questions and a potential loophole. The administration was slow to get personal protective equipment to the residential DDS system, and it still isn’t clear whether the level of training and oversight of staffing and care in the system is adequate.

Does any of this concern Govern Baker or Attorney General Healey or the state’s legislative leaders? We’ve seen little or no evidence that it does.

One might argue that 110 deaths in the DDS system is a relatively low percentage of the system’s total population. But 110 deaths is 110 deaths too many. How many of those deaths might have been prevented had there been adequate testing and training of staff?

How does bringing charges against two officials who ran one residential facility in the state ensure that there will be improvements in the practices and procedures in all other congregate care facilities?

While criminal charges in the Soldiers’ Home case may be warranted, we would submit that criminal charges should be among the last actions taken by the attorney general in response to a public health crisis like this one. Those charges should come only after the AG has conducted an investigation of the overall response of the state’s congregate care institutions and policies and practices, both public and private.

Those comprehensive investigations are almost never done, and we strongly doubt one was done by Healey’s office. Governor Baker, himself, ordered an independent review focused solely on the Soldiers’ Home deaths, which resulted in a report in June that was widely covered by the media.

That report proved the rule that the investigations that are done are targeted to specific events and almost never offer insights into underlying problems that are usually much wider in scope.

And public officials and administrators react almost exclusively to the resulting media reports in the hope of generating headlines favorable to themselves. It’s no surprise that headline-making indictments have come out of the Soldiers’ Home case.

While those deaths certainly warranted major media coverage, the media have been singularly uninterested in similar problems in the DDS system. After some initial coverage of concerns we, in fact, raised early on about the administration’s inadequate efforts to protect DDS clients from the virus, there has been almost no media coverage from roughly May onwards.

All of this may explain Attorney General Healey’s overall lack of interest in the DDS system. More than a year ago, we contacted Healey’s office to raise concerns about the AG’s apparent lack of focus on abuse and neglect of persons with developmental and other disabilities. While we appreciate that staff from her office did agree to meet with us, we received no indications in response to our subsequent queries that anyone was following up on our concerns.

Given that Healey had, at the time, taken an active role in scrutinizing and penalizing operators of nursing homes that provided substandard care to elderly residents, we asked her office for records of similar fines, settlements or penalties levied against DDS providers from the previous five years. Her office was unable to come up with virtually any records of such actions.

Many in the political system have been celebrating the Soldiers’ Home indictments as a signal that the state is aggressively going after the people responsible for failing to prevent COVID infections and deaths in the commonwealth’s institutions. Unfortunately, we’re not seeing a lot to cheer about at this point.

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

August 21, 2020 2 comments

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

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

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

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

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

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

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

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

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

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

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

DPPC report appears biased in downplaying evidence of abuse in choking case 

March 12, 2020 Leave a comment

Last April 19, Michael Person arrived at his daughter, Maria’s, group home in Peabody and found her unresponsive and breathing shallowly.

A member of the group home staff was at Maria’s bedside, unaware that there was a problem, and was feeding her calcium through her g-tube. The group home is run by the May Institute, a corporate provider to the Department of Developmental Services (DDS).

Maria, who is 22, has a genetic abnormality that resulted in an intellectual disability and complex medical issues, including seizures and a susceptibility to aspiration pneumonia.

Michael, who knew immediately that Maria’s life was in danger, said he lifted her up, took her out of the residence and drove her to his own home where he keeps a tank of oxygen for her. After reaching his home within six minutes, he administered the oxygen. He then called 911.

Maria was stabilized by the local ambulance company and rushed to Winchester Hospital, and was then transported to Boston Children’s Hospital by the latter hospital’s critical care transport team. She was placed on life support in the Boston Children’s Hospital Intensive Care Unit for 14 days, and remained in the hospital for a total of 27 days.

Although Maria was diagnosed with aspiration pneumonia and needed intubation, she survived and is now living in a state-operated group home run by DDS.

Michael and Maria Person1

Michael and Maria Person. Michael believes Maria would have died of aspiration pneumonia within half an hour if he had not arrived when he did at her group home. Yet DPPC found no evidence of neglect in the case. (Photos courtesy of Michael Person)

The Disabled Persons Protection Commission (DPPC), which investigated the incident, found no substantiated abuse or omission of care in the case. The DPPC report had labeled two of the group home staff members as “alleged abusers” or “Alab1” and “Alab2.”

The DPPC report stated that the medical team at Boston Children’s Hospital was not able to say specifically what caused the aspiration pneumonia, or if any delay in treatment had caused a worsening of Maria’s condition.

“Without evidence of a specific cause of the condition, no connection can be made to (the alleged abusers) and any reported act or omission on their part,” the report concluded. The report also concluded that there was no act or omission on Michael’s part in the delay in Maria’s care.

Recommendations were included in the report, with no further specifics, for “retraining all staff members on choking prevention” and individual meal plans, and ensuring that documentation regarding specific care-giving needs are “clear and in place” before an individual moves into a residence.

Michael believes the DPPC report was deficient, and that the group home staff were at fault in failing to recognize Maria’s obvious symptoms of respiratory distress. Had he not happened to arrive at the group home at the time he did, Maria would surely not have survived for more than another half hour, he maintains.

Michael also believes that Maria contracted aspiration pneumonia because her food was prepared incorrectly by the group home staff on April 18, the day before he found her unresponsive. She can only eat a specially prepared pureed diet of “honey thickness.”

The day before Maria was found unresponsive by Michael, she vomited in her day program after eating a lunch prepared by the group home staff. The DPPC report acknowledged that the next morning, she had a cough and congestion, and that the staff later observed spit bubbles in her mouth; but the staff did not seek advice from medical professionals about those symptoms.

After reviewing the DPPC report, we share a number of Michael’s concerns about it. Overall, the report does appear to downplay key evidence that might have the potential to substantiate abuse in this case.

For instance, while the report stated that the medical team at Boston Children’s Hospital was unable to say what had caused the aspiration pneumonia, it is not clear that the investigator interviewed members of the team directly. The report stated that the investigator spoke to a hospital official whose identity was redacted and who had previously spoken to Maria’s medical team.

It is also hard to believe the reported assertion that delaying medical care would not necessarily worsen aspiration pneumonia.

There are also a number of turns of phrase in the report, as discussed below, that raise questions whether the investigator held a bias against Michael.

DPPC defines “abuse” as “an act or omission that results in serious physical or emotional injury.” “Omission” is defined as “a caregiver’s failure, whether intentional or not, to take action to protect a person with a disability…to the degree it causes a serious injury.”

It seems clear in this case that the staff in Maria’s group home failed to take action to protect her despite the fact that she was exhibiting potential signs throughout the day of respiratory distress, and that she experienced a serious physical injury as a result.

Even if it wasn’t clear early in the day that her coughing, congestion, and spit bubbles were signs of a potentially serious illness, the staff didn’t seek medical advice about those symptoms. By 3 p.m., when Michael arrived, a staff member was then not attentive enough to notice Maria was unresponsive and potentially in a state of medical distress even as she was feeding her though a g-tube.

On Monday (March 9), I sent an email to Andrew Levrault, DPPC’s assistant general counsel, inviting comment on the case and the commission’s investigation.

Also on Monday, I emailed Lauren Solotar, president and CEO of the May Institute, asking for comment on the case and any measures the provider has taken to make sure this kind of incident doesn’t happen again. Thus far, I haven’t gotten a response from either Levrault or Solotar.

The following are some of our specific concerns about the DPPC’s report in this case:

The DPPC report appears to have attempted without evidence to discount Michael’s assertion that Maria was in a crisis state when he found her

The DPPC report appears in several instances to have attempted to discount Michael’s assertion that he believed Maria was in a state of crisis when he first saw her in the group home on April 19. The implication of the report in those instances appears to be that because Michael did not really believe Maria was in crisis, the staff cannot be blamed for failing to recognize she was in crisis either.

Yet the evidence clearly shows that Maria was unresponsive and possibly not breathing, and Michael was acting on that basis. Michael insists that he knew from the moment he saw Maria that she was in distress.

Maria recovering at BCH

Maria recovering at Boston Children’s Hospital from the aspiration pneumonia.

That there was a crisis situation is evident in the reports from the Wakefield Fire Department and Acton Ambulance, which arrived at Michael’s house at about 3:30 p.m. Those reports described Maria as “unconscious,” “unresponsive,” and being in a “coma.” Maria was diagnosed in Winchester Hospital Emergency Room as being in respiratory distress and having pneumonia.

But in one instance, the DPPC report included a statement from one of the alleged abusers that after Michael arrived at the group home, he “chit-chatted” with her, implying that he didn’t show a sense of urgency at the time.  The report added that “Alab1 reports (Michael) conversationally told her he’d likely take (Maria) to the hospital over the weekend.” (My emphasis.)

Michael insists that he never chit-chatted or spoke conversationally about taking Maria to the hospital. He told COFAR that upon arriving at the group home, he walked into his daughter’s room and immediately knew something was wrong. “I saw she was passed out, gray and clammy,” he said, adding that when he picked Maria up, “her head just flopped over. There was no chit-chat,” he said.

The report further quoted “Alab1” as saying Michael told her “it looks like a nebulizer weekend,”  and that he “was going to go home, pack a bag and take her to Boston Children’s Hospital.”

Michael similarly denies he held any such conversation with the staff member. The DPPC report, however, didn’t note Michael’s denials. Michael contends the investigator never asked him to respond to claims made about his statements by the alleged abusers.

In another instance, the report included the following statement regarding Michael’s interview with the investigator: “(Michael) reported that (Maria) was in extreme medical crisis, yet he drove her to his home for oxygen, then called 911 for transport.” (My emphasis.)

The word “yet” implies that there is a contradiction between what Michael reported and what actually happened. But the evidence does not show any contradiction. Michael said he drove her to his home because he wanted to get her oxygen as quickly as possible.

That use of the word “yet” was not a fluke or simple carelessness in language because the report used similar language to make virtually the same point in other instances.

In one of those cases, the DPPC report did not even state that Michael’s purpose in driving Maria to his home was to get oxygen for her. According to the report, a DDS official stated that:

(Michael) told him (the DDS official) he thought it was a ‘medical emergency’ when (Michael) arrived to pick up (Maria); however (Michael) did not call 911 until after (Michael) drove (Maria) home, which according to (Michael) took six minutes. (My emphasis.)

In yet another instance, the DPPC report stated that Michael reported that Maria was “gray in color, lifeless, and had weak limbs.” But the the report followed that with the statement, “However,  Alab1 states when (Michael) arrived to pick up (Maria), (he) …provided Alab1 with tips regarding Maria’s glasses, baseline, and AFOs (ankle-foot orthosis braces).” (My emphasis.)

Once again, Michael denied that he held such a conversation with the staff member.

Michael told COFAR that he “panicked” when he saw Maria and rushed out of the house, carrying her to his van. He said that while his house is 14 minutes away from the group home, he held his hand on the horn the entire way to his house and ran every red light. He got to his house in six minutes, ran inside and got the oxygen and administered it to Maria.

The apparent implication of the DPPC report that Michael didn’t perceive Maria to be in distress because he “chit-chatted” with one of the alleged abusers, provided her with tips about Maria’s care, and then wasn’t concerned enough about the situation to immediately call 911 is at odds with what Michael says happened and what the evidence indicates happened.

At another point, the report did acknowledge that another staff member, who was apparently not involved in Maria’s care, stated that they knew something was wrong because “(Michael) was going too fast in taking (Maria) to his van.”

The DPPC report accepted what may be second-hand claim that a delay in getting medical care would not necessarily have worsened Maria’s condition.

The DPPC report stated that the investigator interviewed a Boston Children’s Hospital official who had spoken to Maria’s medical team at the hospital, and that the team members were “unable to say what was the cause of Maria’s pneumonia or if the delay in obtaining medical care may have worsened her condition.” The identity of the hospital official who was interviewed by the investigator was redacted in the report.

The language of the report implies that the DPPC investigator did not directly or personally interview Maria’s medical team, but rather relied on a second-hand description of what the team members believed to be the case. It that was the case, it would be a glaring shortcoming in the report.

The DPPC report’s main argument for its finding that there was no abuse in the case was that Maria’s medical team was not able to say specifically what caused the aspiration pneumonia, or if any delay in treatment had caused a worsening of Maria’s condition.

It’s hard, in particular, to imagine a case involving aspiration pneumonia in which a delay in obtaining medical care would not worsen an individual’s condition. Maria clearly needed immediate medical attention when Michael found her unresponsive in her group home.

In our view, the apparent failure to directly question the medical team about those reported claims raises significant questions about the veracity of the report’s conclusions.

The DPPC report appeared to downplay the staff’s responsibility for either spotting signs of aspiration or seeking medical advice

As noted, the DPPC report stated that on April 18, after eating lunch at her day program, Maria vomited.

The DPPC report stated that while two individuals, whose identities were redacted, assessed Maria on April 18, “neither… thought she needed medical attention.” And while an individual, whose identity was also redacted, did consult Michael after Maria vomited that day, that individual also “did not follow up with…any other medical professional.”

According to the DPPC report, a May Institute employee, whose identity was redacted, stated there were no indications Maria was in distress at that time or that she needed to be hospitalized. However, the employee instructed the group home staff to monitor Maria for worsening symptoms after she had vomited, including checking for respiratory distress.

The next morning, April 19, the group home staff decided to keep Maria home from her day program, and noted that she seemed lethargic and was congested and sneezing, and had a runny nose.  The DPPC report stated that the group home staff contacted Michael regarding those symptoms, and Michael responded that Maria appeared to be sick and they “should let (her) rest.”

At 12:20 p.m. on April 19, the report stated, one of the staff members noticed spit bubbles in Maria’s mouth. The report stated that at that point, “Nursing advised staff to follow up with (Michael), which staff did. However, (an individual whose identity was redacted) was not notified…and there was no followup with any other medical professional,” the report stated.

As the DPPC report had stated, the staff was on notice that they should be checking for respiratory distress, and Maria was known to be at risk of aspiration pneumonia. Yet when Maria began to display symptoms that were consistent with that, the staff  repeatedly consulted Michael rather than medical professionals.

The DPPC report, in fact, included, as an “additional finding of risk,” that:

During (Maria’s) short time in the (May Institute) residence, the agency staff sought guidance from (Michael) rather than feeding specialists or outside medical professionals with regard to (Maria’s) feeding protocols and medical diagnoses.

It appears that the DPPC was both crediting the staff for consulting with Michael regarding Maria’s symptoms and criticizing the staff for doing so. Michael was not at the residence at the time to observe Maria until he arrived in the afternoon when she was already unresponsive. He is also not a medical professional.

The report downplayed the possibility that Maria may have aspirated on wrongly prepared food

The DPPC report included a statement from a Boston Children’s Hospital employee, whose identity was redacted, that Maria could aspirate if food was prepared too thick. The report then stated that the hospital employee added that there were “multiple other ways she could have aspirated.”  None of those other ways in which she could have aspirated were listed.

Michael said he believes the cause of Maria’s aspiration pneumonia was likely improperly prepared food by the group home, which Maria ate for lunch the day before she became unresponsive.

Maria with pureed foods

Maria at Boston Children’s Hospital with pureed foods and liquids that she is able to consume.

The DPPC investigator interviewed a day program staff who said there were times when Maria’s food “wasn’t good” when she arrived there and they would reprocess it. The report also interviewed one individual, whose identity was redacted, who said there was a clinical note that Maria aspirates on all liquids unless it is prepared to a honey consistency.  Another individual, whose identity was also redacted, said Maria was at risk of aspirating on “all oral intake” and needs smooth purees.

The report further stated that Michael reported that there were lumps in Maria’s food as well as that her food was too thin and runny on April 12, and a photo confirms that.

However, the report concluded, as noted, that there wasn’t sufficient evidence to identify the food prepared on April 18 as the cause of Maria’s aspiration pneumonia.

It appears that the DPPC investigator did not interview the alleged abuser, who had prepared Maria’s food on April 18, about issues involving the food preparation until July 26, more than three months after the aspiration incident.  At the time of that interview, the alleged abuser said she couldn’t recall what food Maria had been given, according to the report.

The DPPC report added that Alab1 stated that although Michael had been critical of the texture of the food prepared on April 12, it was the same texture as the food Alab1 had prepared on April 10 and had fed to Maria that day and the next.

The report did not explain how Alab1 was able to remember the texture and consistency of the food she prepared on April 10, but could not remember what food she prepared on April 18. That latter date was the day Maria vomited after eating lunch.

Perkins School had emphasized need for food to be pureed

Maria had actually moved into the May Institute residence on April 10, only nine days before the incident occurred in which Michael had found her unresponsive. She had previously lived at the Perkins School for 19 years.

Michael said the Perkins School staff knew how to prepare Maria’s food to the proper consistency to prevent her from choking on it. The May Institute staff, however, often made her food either too lumpy or else too runny, Michael said. Either way, it could cause Maria to choke.

A “transition portfolio” prepared by the Parkins School for Maria mentions in at least two places the need for Maria’s diet to be “puree (no lumps).”

Michael was only fully interviewed once by the DPPC investigator

Michael contends that the DPPC investigator fully interviewed him only once, on April 23, and never re-interviewed him to respond to statements made by the alleged abusers concerning his statements or sense of urgency at the group home.

In an appeal of the findings of the DPPC report, which Michael filed on November 20, he stated that he had “highly relevant first-hand knowledge of events in question, which were not gathered by the investigator.”

In a January 7 letter denying Michael’s appeal of the findings in the DPPC report, Levrault, DPPC’s assistant general counsel, stated that the investigator “had phone and email contacts with (Michael) on five occasions subsequent to (the April 23 interview). Thus (Michael) had ample opportunities to provide information to the investigator concerning the allegations.”

However, Michael contends that with one exception, he had himself initiated the subsequent calls and email contacts to ask only about the status of the investigation. (He said the investigation took eight months, yet he had initially been told it would take only one month.)

That exception was on July 19, Michael said, when the investigator called him to ask if he had any documents concerning how Maria’s food should be prepared. He provided several documents to the investigator indicating that her food had to be pureed, lump free. Other than that, he said, the investigator never asked about issues in the case.

In particular, Michael said, the investigator never followed up with him to discuss statements made by the alleged abusers about him.

Levrault’s appeal denial letter did not actually say that Michael was further interviewed during the subsequent phone calls and email contacts, but only that he had “multiple opportunities to provide information to the investigator concerning the allegations.”  In fact, Michael did provide additional information, but he claims it wasn’t considered in the report.

The case appears to present evidence of omission of care

In his denial of Michael’s appeal, Levrault noted DPPC’s definition of “abuse” as “an act or omission that results in serious physical or emotional injury.”

As I noted above, that seems to be an accurate description of what happened in this case. The staff took no action to protect Maria even though she was in a state of physical distress. The minute Michael walked into the room he recognized the signs of that distress. That the staff person was right there attempting to feed Maria, indicates, at best, a lack of basic training in their job.

Moreover, that staff person and potentially other staff in the residence appear to be at fault in failing to seek medical attention earlier in the day and potentially the day before when Maria vomited after eating lunch.

We have frequently called for more resources for DPPC because the commission is the only independent state agency that is authorized to investigate abuse of disabled adults in Massachusetts. But cases like Maria’s call into question whether DPPC, like DDS, gives deference to providers in its investigations and discounts evidence provided by family members and guardians.

All too often, we hear complaints from those family members that abuse investigations done by DDS and DPPC did not fully consider the evidence and wrongfully came to the conclusion that no abuse had occurred.

This case certainly appears to provide evidence to support that claim that the state’s processes and procedures for investigating abuse of the developmentally disabled do not always operate fairly or impartially, and that reforms of the system are needed.

Resident of group home was sickened by an inappropriate anti-psychotic medication as prescription was increased by 500%

March 2, 2020 5 comments

A group home administered an inappropriate and unnecessary anti-psychotic drug to an intellectually disabled woman and increased the dosage by 500 percent last year, according to the woman’s sister.

The 57-year-old woman, who we are referring to as C.J. for privacy reasons, developed tardive dyskinesia after being administered the anti-psychotic drug, Latuda, for nine months, according to her sister, Ellen O’Keefe, who is also an advocate for her.

The staff of the Canton-based group home also left the woman alone on two occasions last June and in January of this year in apparent violation of regulations of the Department of Developmental Services (DDS). The group home is operated by Delta Projects, Inc., a corporate provider to DDS.

In one instance, C.J. was admitted to a hospital for treatment of pneumonia after she was left alone by the staff in the residence, O’Keefe said. She was later admitted to the same hospital for treatment of symptoms of the tardive dyskinesia, her sister said.

Tardive dyskinesia is a serious disorder that caused further cognitive impairment in C.J. and involuntary, repetitive body movements, O’Keefe said. She said her sister has also begun to need a walker. O’Keefe, at COFAR’s suggestion, reported the use of the medication on C.J. to the Disabled Persons Protection Commission (DPPC).

O’Keefe said C.J., who has moderate intellectual disability, can’t read, but has very good communication skills.

Last week, O’Keefe and her family moved C.J. to a new group home run by a different provider, South Shore Support Services. O’Keefe said she was not offered an option by DDS of placing C.J. either in a state-run group home or a residence closer to her family; but the family accepted the placement DDS offered because they wanted C.J. removed from Delta Projects’ care as soon as possible.

C.J. had lived for about four years in the Delta Projects group home. The increasing dosages of Latuda were prescribed by Carine Luxama, a nurse practitioner with Nova Psychiatric Services in Quincy, a subcontractor to Delta Projects.

Ellen and Carole photo2.jpg

Ellen O’Keefe (left) and C.J.  C.J.’s apparently inappropriate placement on an anti-psychotic medication in her group home last year apparently resulted in tardive dyskinesia, a serious side effect.

According to records in the case, Luxama first prescribed a dosage for C.J. of 20 mg per day of Latuda in March 2019, and then periodically upped that dosage to 120 mg by November.  In December, at O’Keefe’s insistence and that of another of C.J.’s sisters (who has asked to be referred to by her first name, Nancy), Luxama agreed to discontinue the medication.

Luxama, who I reached last Wednesday (February 26), declined comment on her role in prescribing the Latuda medication for C.J., saying she is prevented from discussing the matter due to patient confidentiality.

According to Wikipedia, Latuda is used to treat schizophrenia and bipolar disorder — mental impairments that can produce delusions, hallucinations, and extreme mood swings. In addition to tardive dyskinesia, serious side effects of Latuda may include neuroleptic malignant syndrome, a potentially life-threatening reaction; an increased risk of suicide, and high blood sugar levels.

Newsweek magazine reported in 2015 on a study in the British Medical Journal showing that anti-psychotic medications were being “grossly over-prescribed” to people with intellectual disabilities. In the study of 9,135 people, 71 percent “did not have the kind of serious mental illnesses the drugs were designed to treat.”

“All along, we had no idea that Latuda was in fact an anti-psychotic medication,” O’Keefe said. “We believed it was in the same class of anti-depressant medications she had always been prescribed by her previous psychiatrists.” 

In 2015, O’Keefe signed a health care proxy statement on C.J.’s behalf, which gave her the authority to make all health care decisions for C.J. and “to give consent to any medical procedures, including treatment with anti-psychotic medication.” However, O’Keefe said that she never gave informed consent to the Latuda that C.J. was placed on, or to its increased dosages.

I have received no response to emails I sent seeking comment on the case to several Delta Projects staff on February 20 and February 25, including to John Pallies, Delta Projects president and CEO.

Family disputes diagnosis of delusions

In her “psych medication” case notes, Luxama wrote on November 1 — some seven months after first prescribing the Latuda — that C.J. was experiencing hallucinations and delusions, and was “having conversations with people no one sees.”

However, O’Keefe strongly disputed that C.J. has ever been delusional, and said she had never previously been diagnosed as psychotic. She said C.J. frequently engages in “self talk,” a coping mechanism for many people with intellectual disabilities. Her self-talk, O’Keefe said, has sometimes been misinterpreted by group home staff as delusional behavior.

O’Keefe said C.J.’s mood swings have largely been the result of her unhappiness with the lack of work activities offered in her day program in recent years. (COFAR has reported that many former participants of DDS sheltered workshops have continued to experience a lack of work opportunities after the workshops were shut down by the state as of 2016.)

In 2014, C.J.’s then long-standing primary care doctor at Brigham & Women’s Hospital described her as suffering from “generalized anxiety disorder” and panic attacks resulting from “being far from her family, worrying about her mother’s health, and not having access to a peer group with whom she can interact and be active.” Anxiety disorder and panic attacks do not necessarily involve delusions or other forms of psychosis.

In her case notes prior to November 1, Luxama did not mention any psychotic or delusional behavior on C.J.’s part. In her notes dated March 25, when she first prescribed Latuda, Luxama wrote only that she was prescribing it for “mood swings.”

While anti-psychotic medications are sometimes used to treat non-psychotic anxiety disorder, at least one psychiatric study warned that:

…the side effect burden of some atypical anti-psychotics probably outweighs their benefits for most patients with anxiety disorders. The evidence to date does not warrant the use of atypical anti-psychotics as first-line monotherapy or as first- or second-line adjunctive therapy in the treatment of anxiety disorders.

Latuda falls into the class of what are known as “atypical” or “second-generation” anti-psychotics. The study added that:

…some patients with highly refractory anxiety disorders may benefit from the judicious and carefully monitored use of adjunctive atypical anti-psychotics. A careful risk-benefit assessment must be undertaken by the physician, on a case-by-case basis, with appropriate informed consent.

However, O’Keefe said she and Nancy, who is also an advocate for C.J., didn’t know that Latuda was an anti-psychotic medication until O’Keefe received a notice in December from Medicare stating that C.J. had been approved in November for another drug, Ingrezza. That sparked her curiosity, she said, and she looked up Ingrezza and found out it is used to treat tardive dyskinesia. Tardive dyskinesia is known to be caused by anti-psychotic medications.

O’Keefe said Luxama also did not disclose that C.J. was being treated with Ingrezza for tardive dyskinesia, and the group home staff did not respond when O’Keefe asked about the Ingrezza on three occasions in early December.

O’Keefe believes the continually increasing dosages of Latuda caused the tardive dyskinesia disorder, which was exacerbated by a final 50 percent increase in the dosage from 80 mg to 120 mg in mid-November. She said that last increase was not disclosed to her family by the group home until almost a month after the fact.

Left alone twice

During the period in which C.J. was losing cognitive functioning, she was left alone twice by the staff in her group home. In the first of those instances in June, she had pneumonia and was admitted to a hospital for treatment after a visiting nurse not associated with Delta Projects found her seriously ill on a couch in the residence.

C.J. was left alone in the residence for a second time in late January.

DDS Commissioner says leaving C.J. alone was “not acceptable”

O’Keefe reported the first incident in which C.J. was left alone in the group home to DPPC, and reported the second incident directly to DDS Commissioner Jane Ryder. O’Keefe cc’d COFAR in her January 31 email.

In a February 7 email in response to O’Keefe and to COFAR, Ryder maintained that “leaving an individual home alone is absolutely not acceptable and DDS has taken immediate and appropriate action.” 

Ryder said staff at Delta Projects “have been terminated as a result…and DDS has increased oversight and monitoring of the Delta residences.”  She added that DPPC was contacted “and a thorough investigation of the matter will be conducted.”

Ryder did not respond to an email I sent to her on February 20, asking for comment about the medication issue.

C.J. photo1

C.J. on a family outing.

Inappropriate placement on anti-psychotic medication

O’Keefe told COFAR she was surprised to find out in December that C.J. had been placed on an anti-psychotic medication because C.J. is not psychotic and was not diagnosed as such by two other psychiatrists who have cared for her in the past. She said she was never prescribed that class of medication before.

On December 7, 10, and 20, O’Keefe sent three separate emails to Kelley Hegarty, director of residential supports at Delta Projects, asking why C.J. was prescribed a medication that was causing her to have symptoms of tardive dyskinesia. She said Hegarty didn’t respond to any of her emails.

On December 20, after first learning at C.J.’s annual physical that Luxama had raised her prescribed dosage of Latuda to 120 mg from 80 mg, Nancy emailed Luxama, saying that at that physical, she noticed that C.J.’s “whole demeanor, body language, and ability to communicate were greatly impaired.”

“Who ordered this drastic change (in medication), when, and why?” Nancy asked in the email. According to Nancy, C.J. was exhibiting “multiple, troubling side effects” such as rigidity, hand shaking, psychomotor impairment, loss of balance, stiffness of arms and legs, dark colored urine, and flat affect in her face.”

Nancy asked that all of C.J.’s medications be reviewed and that “serious consideration be given to lowering the dosage of Latuda with a goal of slowly tapering her off this medication and eliminating the known side effects that this drug causes.”

Some two weeks after Ellen began inquiring about the Latuda and its apparent side effects, Nancy finally received a response on December 20 from Hegarty of Delta Projects. Luxama was out of the office that week, but Hegarty said she had been able to reach her and that Luxama had “agreed” to decrease C.J.’s dosage of Latuda from 120 mg to 60 mg per day. 

On December 27, Tori Petti, Delta Projects residential manager, provided O’Keefe with a timeline of C.J.’s Latuda dosages. O’Keefe said she and Nancy had insisted on the timeline after discovering that the dosage had been increased from 80 mg to 120 mg without their knowledge.

O’Keefe said the last increase in the dosage of Latuda resulted in a two-week stay for C.J. in January at Milton Hospital where she needed physical and occupational therapy related to her tardive dyskinesia symptoms.

According to Petti’s timeline, Luxama first prescribed a dosage of 20 mg per day of Latuda starting on March 25, and raised that dosage on May 6 to 60 mg because C.J. was “appearing ‘more disorganized and paranoid.”

Then on November 1, Luxama increased the prescribed dosage of Latuda to 80 mg and then to 120 mg on November 14, “due to increased anxiety, mood swings, irritability, paranoia, delusions, and aggressive panic attacks,” according to Petti’s timeline.

O’Keefe, however, later challenged those assessments of C.J.’s behavior, stating in a January 14 email to Luxama that “no reasonable examples of this behavior were cited in your notes.”

The real problem, O’Keefe maintains, was that C.J. was experiencing negative side effects of increasing dosages of an inappropriate medication. “The Latuda was causing an alarming decrease in her cognitive awareness and physical endurance,” O’Keefe said. “She became more docile and passive so Delta staff could handle her more easily and suppress her independence.”

O’Keefe said that on December 27 and January 3, she sent emails to Luxama, seeking her rationale for the final increase in the Latuda dosage to 120 mg. She said she got no response until January 7, when Luxama emailed her and seemed to place responsibility on the Delta Projects staff for not having informed O’Keefe and Nancy of the November dosage increase.

“Being new to (C.J.)’s care team, it was my understanding that (Delta) staff would be communicating the outcome of appointments with all involved parties, and that I would be available to answer any questions or concerns anyone might have,” Luxama stated in the January 7 email.

But while Luxama said she would be available to answer questions and concerns, O’Keefe said Luxama didn’t respond to her follow-up email with further questions on January 14.

In that January 14 email to Luxama, O’Keefe said she and Nancy believed Luxama was relying on assessments of C.J’s mental state by non-clinical staff in her group home and day program. O’Keefe said that C.J. was “very unhappy” because her day program had “practically stopped offering her enclave work (and) there is nothing ‘meaningful’ for her to do.” C.J.’s mood, Ellen told COFAR, “was largely the result of her environment, not because she had mental illness.” 

Referring to Luxama’s alleged reliance on the group home and day program staff assessments in prescribing the Latuda, O’Keefe’s January 14 email added:

The individuals who support (C.J.) day-to-day and made these ‘clinical type of evaluations’ about her behavior do not truly understand the repercussions in their ‘choice’ of words they used in describing (C.J.), and in our opinion this is a very dangerous practice. Why didn’t you ever elicit our input?  When we started this relationship, you agreed to a team approach – including input from Nancy and I who are also her advocates.

Meanwhile, Luxama’s agreement to reduce the Latuda dosage in December apparently did not result in a reduction in C.J.’s symptoms of tardive dyskinesia, at least in the short term.

On January 8, C.J. was taken by ambulance to Milton hospital for testing, according to an email to O’Keefe and Nancy from Petti. “We believe there is a neurological issue with C.J. as her cognitive abilities continue to decline,” Petti’s email added.

In her January 14 email to Luxama, O’Keefe stated that When C.J. was admitted to Milton Hospital, “the emergency doctor noted she was ‘highly medicated’ and inquired about the anti-psychotics she was taking as her cognitive ability was so impaired.” O’Keefe added in her email that the ER doctor “also noted she (C.J.) had trouble moving her jaw and couldn’t speak.  Are you aware that she has had accidents due to incontinence now? We have since learned that this is also one of the adverse side effects of Latuda.”

The day before, O’Keefe stated in a January 13 email to Luxama that “we want her OFF that medication now.” (Emphasis in the original.) Nancy also sent a similar email to Luxama and cc’d DDS officials, making the same request to discharge C.J. from the Latuda immediately. “She (C.J.) does not like the ‘way it makes her feel’ nor does she like the many negative side effects she has had to suffer through,” Nancy’s email stated.

That same day, Luxama did respond to Nancy, stating in an email that she was “sorry to hear she (C.J.) is not liking how the medication makes her feel and will send an order to the residence to discontinue the medication effective immediately. Thank you for reaching out.”

O’Keefe said C.J. is still suffering from the severity of Latuda’s side effects even though she has not been taking it for over a month. She said that in addition to needing a walker, C.J. now has difficulty with fine motor skills and has hand tremors. 

Violations of regulations

We are concerned that the prescription and administration of Latuda to C.J. violated DDS regulations, which state that no medication may be used without informed consent or “in quantities that interfere with the individual’s habilitation.” Habilitation refers to  services and supports that help DDS clients keep or improve skills and functioning for daily living.

In addition, the regulations state that medication “shall not be used by programs…for the convenience of staff or as a substitute for programming.”

It also appears that the inappropriate administration of Latuda to C.J. caused serious physical injury to her, which constitutes abuse under DPPC’s enabling statute. Serious physical injury is defined in DPPC regulations as including “harmful symptoms resulting from the use of medication or chemicals without informed consent or appropriate authorization.”

Left alone for first time in group home

In June 2019, a visiting nurse who was treating C.J. for pulmonary disease arrived at her group home and found her very ill in the residence on a couch. According to O’Keefe, the nurse, who is not associated with Delta Projects, said the only Delta Projects staff member in charge of the clients told her she needed to leave to drive another client to work.

O’Keefe said the Delta staff member made the assumption it was okay to leave C.J. even though it was DDS policy that a residential staff member must always be present. When the visiting nurse completed her scheduled visit with C.J., she needed to leave to see her next client, but did not want to leave C.J. alone. O’Keefe said the nurse found that C.J. was becoming increasingly lethargic and dehydrated.

O’Keefe said that after the nurse waited for over an hour for the Delta staff member to return, “she became exasperated and worried about CJ’s well-being,” and called O’Keefe.   

O’Keefe said that when she arrived at the group home, “I immediately took the nurse’s advice and didn’t wait for the Delta staff member to return because it was obvious my sister needed immediate medical attention.”  She took C.J. to Milton Hospital where she was admitted for dehydration and pneumonia. She was placed on an IV for 3 days.

In an email to O’Keefe on June 27, Colleen Mulligan, DDS area director, stated that she was requesting that Delta Projects “train/ re-train staff on (C.J.)’s medical needs…to ensure that this does not happen again.” Mulligan’s email added that, “At a minimum, the morning staff should have called the main office/Delta on-call person if they did not know what to do. They should not have left her…”

Nearly four months later, O’Keefe said, she received a call from a DDS investigator who had questions about the June incident. “After several questions,” O’Keefe stated in an October 25 email to her sister Nancy, “she (the DDS investigator) “came to the consensus that C.J. should be in a group home with nursing oversight, which I explained Delta does not have.”

Left alone for second time

But the June incident did not mark the last time C.J. was left alone in her group home. It happened again on January 31, O’Keefe said in the email sent that day to DDS Commissioner Ryder.

Once again, it appears DDS regulations were violated by the group home. It appears that the violations were of regulations stating that providers of residential supports must assure the presence of staff whenever an individual is present in the home.

“We are shocked and horrified that DDS would continue to contract with an organization such as Delta Projects who have proven over and over again their inability to provide safe care for our family member,” O’Keefe stated in the email to Ryder. “Agencies like Delta Projects are entrusted with caring for society’s most vulnerable population and DDS is responsible to ensure they are in compliance.”

A newspaper’s coverage of abuse and the enactment of Nicky’s Law are steps in the right direction

January 21, 2020 2 comments

One newspaper in Massachusetts has been shining a spotlight lately on the problem of abuse and neglect of persons with developmental disabilities in the state.

Meanwhile, the state Legislature took a strong step last week in barring abusive caretakers from working for providers in the system.

Yet these two positive developments also highlight the fact that the media in Massachusetts in general and the Legislature as a whole have to do more than they have been in recognizing ongoing problems in the care of persons served by the Department of Developmental Services (DDS).

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

One newspaper’s systematic coverage and one important legislative victory appear to be the exceptions to the rule, which has generally been one of benign neglect on the part of the media and Legislature.

The media exception has been The Springfield Republican, which published an in-depth report on January 10 about a DDS corporate provider, Guidewire, Inc. The newspaper revealed, among other disturbing facts, that at a Springfield group home operated by Guidewire, staff encouraged residents to fight each other and awarded prizes including money, cigarettes, marijuana and alcohol.

Perhaps not coincidentally, the article ran just a few days before the Massachusetts House unanimously approved a bill that would create a registry of caregivers found to have committed abuse or neglect. Such persons would be banned from future employment in DDS-funded facilities. The bill known as “Nicky’s Law,” which was passed by the Senate in October, is expected to be signed into law by Governor Baker within the next 10 days.

A few days before the Springfield Republican article ran, the same newspaper published a follow-up to COFAR’s blogsite report about the termination of a DDS contract with another DDS provider, the Center for Human Development, to operate two group homes in which care was found to be substandard. In that case, COFAR had first reported allegations of poor care raised by the foster mother of a resident of one of the group homes.

Last year, the Republican followed up on COFAR’s initial reporting on CHD, and ran a comprehensive article about the failure of DDS’s licensure inspection process to identify ongoing problems in the two CHD group homes.

Both the reporting by the Republican and in COFAR’s blog posts helped to spur an internal investigation of CHD by DDS. Last fall, the DDS Bureau of Public Integrity cited potential “systemic issues” across CHD group homes.

Guidewire details underscore the need for Nicky’s Law

According to the Republican. eight employees of Guidewire were fired after the “fight club” details were brought to the attention of DDS in 2011. But the employees were given the right to return to work at other DDS-funded facilities in 2018. And while Guidewire was subject to a corrective action plan and staff were retrained, no criminal charges were filed in the case.

To that extent, the Guidewire case underscores the need for Nicky’s Law, which would potentially have prevented DDS from continuing to employ those caregivers.

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

The Springfield newspaper cited COFAR’s own findings last September in which we identified Guidewire as one of the service organizations in the state with the most abuse complaints filed, substantiated and referred for criminal prosecution.

More recently, we analyzed DPPC data on a per-client basis to control for size of each provider, and found that between Fiscal 2010 and 2019, Guidewire was third highest out of 75 providers surveyed in the number of substantiated abuse cases per client. Guidewire was third as well in complaints referred per client for criminal investigation.

But abuse and poor care are problems that go far beyond one provider. COFAR analyzed the outcomes of more than 14,000 abuse complaints in the Fiscal 2010-2019 period.

Rest of the media needs to examine these issues

The Springfield Republican’s reporting shows the good things that can happen when the media shines a light on issues and activities that are causing harm. But it usually takes a commitment and cooperation among several media outlets to place these matters on the agenda of politicians and policymakers in order to bring about real change.

Unfortunately, with the exception of the Republican, the mainstream media in this state has shown little interest in systematically reporting on the serious problems that afflict the care of persons with developmental disabilities in the DDS system.

Major investigations have been undertaken of abuse of the developmentally disabled in group homes by newspapers in other states in recent years. Those reports include multi-part exposes starting in 2011 by The New York Times, in 2013 by The Hartford Courant, and in 2016 by The Chicago Tribune.

The mainstream media in Massachusetts has yet to to pay more than passing attention to the DDS system. We have also not had any success in getting a response from The Boston Globe to our concerns about currently proposed legislation that would make the state’s process of investigating abuse of the developmentally disabled far less transparent.

Children and Families Committee has yet to demonstrate a serious concern about the issues

We are also trying to persuade the state attorney general and the Legislature’s Children, Families, and Persons with Disabilities Committee to begin seriously looking at these issues. While we applaud the role played by the Children and Families Committee in getting Nicky’s Law enacted, the committee has yet to demonstrate a sustained commitment to examining and addressing the problems within the DDS system.

In 2018, the Children and Families committee held two informational hearings on abuse and neglect in the DDS system. But members of the general public were not permitted to present verbal testimony at either hearing, and the committee never followed up on those hearings with a report. It’s not clear what, if any, the purpose of those hearings was.

In the final analysis, media attention and the attention of legislators and policymakers are linked. Legislators, in particular, are not likely to act to address society’s problems if the media isn’t focusing on those problems. It seems we’ve entered an age in which the media’s attention is more fractured than ever before.

The enactment of Nicky’s Law is one example of a piece of legislation that the media did get behind. Yet, the enactment of that law is just a first step in what needs to be a comprehensive reform of the system.

Every now and then, a media outlet like The Springfield Republican gives us hope that there still are journalists out there who will go further than reporting on one bill and will examine the issues underlying the legislation.

Once the media focus is there, we think legislators and policymakers will act more systematically on issues of concern to those people they are supposed to protect — the most vulnerable people in society.

 

 

A disability abuse investigation agency bill has two words in it that could authorize the agency to seal all its investigative records

January 15, 2020 Leave a comment

We are expressing concern over two words in a bill concerning the state Disabled Persons Protection Commission (DPPC) that could authorize the agency to seal all of its investigative records regarding abuse of persons with disabilities in Massachusetts.

In an email we sent this week to state Representative Aaron Michlewitz, chair of the House Ways and Means Committee, and other key lawmakers, we pointed out the potential problem inherent in the language of Section 17 of what is now H.4231. The bill section would change the DPPC’s enabling statute to state that “all confidential information” in the DPPC’s possession shall not be a public record.

The DPPC is the state’s only independent agency charged with investigating allegations of abuse and neglect of adults under the age of 60 with developmental and other disabilities. The DPPC has jurisdiction over a wide range of investigations done by its own staff and the staff of a variety of other agencies.

Those are the two problematic words in Section 17 of H.4231: “confidential information.”

We have no objection to a separate portion of the same sentence in the section stating that “all personally identifying information” shall not be public. But the “confidential information” phrase is poorly defined and so overly broad that we think it would give DPPC the discretion to label virtually anything it wants as confidential and therefore secret.

We are asking people to call the House Ways and Means Committee at (617) 722-2990, and simply urge them to take the words “confidential information” out of Section 17 of H.4231.

As we understand it, Section 17 was recently reworded by the Children, Families, and Persons with Disabilities Committee to respond to concerns we raised last year that the section would potentially make most of the records of the DPPC non-public. The reworded language would be fine with us if the House Ways and Means Committee would simply take out those two words.

Here’s our reasoning for this, in a nutshell:

Right now, DPPC’s enabling statute (M.G.L. Chapter 19C) simply says that the Commission should “…disclose as little personally identifiable information as possible.” There is no reference in the enabling statute to “confidential information.” The enabling statute, moreover, invites the presumption that the agency’s records overall are public. Nowhere does the enabling statute state that the DPPC’s records, in general, are not public.

The DPPC’s regulations, however, do refer to “confidential information,” and define it as including “personal data” and “any and all notes, papers, documents or other investigative materials, including but not limited to interview summaries, collected or compiled by personnel duly authorized by the Commission during the course of an investigation.”

This DPPC regulation (118 CMR 9.03) also specifically states that: “The records of the Commission shall not be considered ‘public records'” (my emphasis).

So, there are at least two inconsistencies between the DPPC’s regulations and its enabling statute, and it would seem that what DPPC is trying to do is make its enabling statute consistent with its regulations in stating at anything that it considers “confidential” is not a public record. As we’ve said before, though, this is a bad direction for DPPC to go. It should change its regulations to be consistent with its enabling statute, not the other way around.

It would seem that what DPPC wants to do is to be able to say that all investigative materials of any kind are potentially confidential and therefore not public records. That is bad news for the public’s right to know.

We actually don’t think Section 17, as a whole, of H.4231 is necessary for reasons I’ll get to below. But, as noted, what we are recommending is that, at the very least, the House Ways and Means Committee remove the words “confidential information” from the section.

Our argument with respect to Section 17 and to DPPC’s secrecy regarding its records in general has always been about the public’s right to know. Complaint-specific information can be a key window into the nature of problems of abuse and neglect in the care of persons with disabilities and in how the state deals with those problems.

Section 17 isn’t necessary

As noted, we don’t think Section 17, as a whole, of H.4231 is needed. The DPPC’s enabling statute, as currently written, gives DPPC the discretion to block “personally identifiable” information, and so does the state’s Public Records Law itself.

The Public Records Law (M.G.L. Chapter 4, Section 7, Clause 26) specifically exempts from disclosure  “data relating to a specifically named individual, the disclosure of which may constitute an unwarranted invasion of personal privacy.” The Public Records Law further exempts “investigatory materials…the disclosure of which materials would probably so prejudice the possibility of effective law enforcement that such disclosure would not be in the public interest.”

The Public Records Law presumes state agency records are public

As the Secretary of the Commonwealth has opined, the state’s Public Records Law presumes all state agencies’ records are public unless a specific exemption in the Public Records Law applies to those records. The first exemption listed in the Public Records Law, known as “exemption (a),” is the enactment of another statute that exempts records of any kind from disclosure.

If Section 17 of H.4231 is enacted as currently drafted, it would change the DPPC’s enabling statute to specifically prevent the disclosure of any material deemed “confidential.” As a result, if any member of the public were to ask for any information that DPPC considered confidential, DPPC could invoke Exemption (a) of the Public Records Law without having to demonstrate that the information was personally identifiable or that it would prejudice effective law enforcement.

DPPC could simply refer to the vague “confidential information” phrase in its enabling statute, and the agency could forever seal those records from public disclosure. The state Public Records Supervisor’s hands would be tied in those cases if anyone were to file an appeal of the denial of the records by DPPC.

So, once again, we believe the potential problem we have described can be avoided by the simple removal of the words “confidential information” from Section 17 of H.4231.  We hope the House Ways and Means Committee does that, or, better yet, removes Section 17 altogether.

DDS terminates contract with provider to operate two problematic group homes

January 7, 2020 9 comments

The state Department of Developmental Services (DDS) has terminated a contract with a corporate provider to run two problematic group homes in East Longmeadow for persons with developmental disabilities.

The contract termination with the Springfield-based Center for Human Development (CHD) was confirmed to COFAR on Monday (January 6) by the provider.

The DDS action, which appears to be relatively unusual for the department, came after Mary Phaneuf, the foster mother of a resident of one of the group homes, alleged poor care in her son’s residence. She said she was told by DDS that due to the contract termination, her son, Timothy Cheeks, and other residents in his home will have to move this month to another residence operated by another provider in Longmeadow.

Starting in 2018, Phaneuf alleged a lack of proper medical care for Tim, including no documented visits to a primary care physician or dentist for seven years. She also said there were no documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect.

Phaneuf’s allegations led to DDS investigations last year, which found “potential systemic issues” throughout CHD’s residences, according to a DDS summary document obtained by COFAR. Her allegations also led to the adoption of new management policies by CHD.

Mary Phaneuf and Tim Cheeks2

Tim Cheeks with his foster sister Nicole Phaneuf Sweeney

COFAR’s blog posts in July and in August concerning Phaneuf’s allegations, and coverage by The Springfield Republican, led to the DDS investigation of the provider.

No comment yet from DDS

As of today (January 7), DDS had not responded to an email from COFAR on December 18 seeking comment on the status of CHD’s contract to operate the residences or the results of its investigations.  In the same email, which was addressed to DDS Commissioner Jane Ryder, COFAR also requested completed reports and action plans in the case, under the state’s Public Records Law. 

As required by the Public Records Law, DDS did respond on January 3 to the public records request in COFAR’s email, saying that the department expected to produce the requested documents by January 10.

COFAR also sought comment on December 18 from CHD. In an email in response on January 3, Ben Craft, vice president of community engagement for CHD, stated the following:

CHD is fully engaged in comprehensive changes in policy and operations to return and sustain the quality of our DDS services to the high standards that we have upheld across our organization for nearly fifty years. Substantial implementation of these improvements has already occurred, and that work continues.

CHD will continue to work hand in hand with DDS to help ensure that our system of care for people with disabilities is meeting their needs while at the same time empowering them to live with the highest degree of independence possible. CHD will actively participate in continuing dialogue with DDS and other state partners about opportunities to improve public-private partnership in service delivery and policy.

Regarding the continuing operation of the two residences, Craft said in the email that CHD, which owns one of the two homes in question, had entered into a lease arrangement for that residence with the new provider, Mental Health Association, Inc. (MHA), “to ensure a smooth transition as MHA prepares homes to accept individuals now being served by MHA.” MHA is also based in Springfield.

Phaneuf said she was told the lease is temporary and that is why her son and the other residents of his home will have to move later this month to an MHA-run group home in Longmeadow. Phaneuf said she was told that two CHD employees from the original house would transfer to her son’s new residence, but would be employed by MHA.

DDS found “potential systemic issues” with CHD

In December, Phaneuf forwarded to COFAR an untitled and undated summary document from DDS about the investigations by its licensure office and its financial investigation unit of CHD. The DDS summary document appears to contradict previous statements by CHD that the problems Phaneuf raised were largely the result of mismanagement by a single staff member – a former house manger of Tim’s group home.

The summary of the review by the DDS Bureau of Program Integrity, which appears to date from September, specifically stated that:

While some of the issues (raised by Phaneuf) can be attributed to the former house manager, the lack of oversight and control procedures are indicators of potential systemic issues across CHD homes.

The DDS summary document also cited a “significant volume of missing and erroneous records provided by CHD” for DDS’s review, and recommended that a full audit of client funds records for all of CHD’s DDS-funded group homes be done by an external agency or firm. The document also said that the “complete independent audit” should cover a two-year period.

In addition, the DDS document stated that while there was no direct evidence of fraud by CHD, the agency must provide complete restitution of the personal funds “for which they cannot provide validation of appropriate expenditure.”

The DDS document also cited a failure by the former house manager to maintain financial transaction  records, and a lack of communication between the corporate business office and house manager around financial transactions.

CHD did not fully implement new policies

According to the DDS document, a review by the DDS Office of Quality Enhancement, the department’s provider licensure unit, found that as of September, CHD had not fully implemented new policies, oversight, or checks and balances that were adopted in January. The OQE recommended that CHD “improve its service delivery, with a focus on training and supervision of staff, healthcare coordination, and management of individuals’ benefits and personal spending money.”

The OQE also noted in the summary document that:

  • Despite heightened focus over past 7 months, some individuals’ medical needs were still not being met.
  • CHD’s Social Security representative payee and funds management procedures needed to be “thoroughly examined and modified.”
  • Promising oversight mechanisms such as quality assurance audits had not been fully implemented.
  • CHD needed to ensure that staff in key management and supervisory positions in Tim’s and the second CHD group home were “thoroughly knowledgeable of DDS regulations, policies, and licensing standards.”

Tim’s weight gain and subsequent medical diagnosis not reported

In August, in the wake of COFAR’s blog posts about the case, CHD announced that it had adopted a series of new policies to better manage and track care in its group homes, including a system to automatically inform family members and guardians of medical appointments and their outcomes. That new family information system was scheduled to be implemented in that same month, according to CHD.

However, Phaneuf said that in September, she noticed Tim had gained a considerable amount of weight in a short period. She said she met with Tim’s primary care doctor on September 10th and learned only then that in late July, Tim had been found to have gained 20 pounds and that medical lab tests had been ordered.

In an email sent to CHD officials on September 11, Phaneuf said the doctor told her the lab tests showed Tim was prediabetic and had hypothyroidism, and that he needed to be placed on a low-carbohydrate diet with daily exercise immediately. “I was not aware of any of this (prior to speaking to Tim’s doctor),” Phaneuf said.

Phaneuf said that after she contacted DDS and CHD about the situation, CHD failed to provide her with an outline of a proposed  food or exercise plan. And at Tim’s Individual Support Plan (ISP) meeting in October, Phaneuf said she was informed that as of that date, no trainings had been scheduled for the staff regarding a low-carb diet or exercise plan for Tim.  

Phaneuf said that while CHD said it would pay for Tim to see a nutritionist  since his insurance would not cover one, Tim does not have the cognitive ability to adequately process nutritional counseling nor does he have control over his own food. CHD shops, cooks and serves food to Tim, she said.

In his January 3 email, Craft said that CHD could not comment “on specifics of individuals’ medical care.” His email added that, “however, CHD program and leadership staff have maintained regular communication with family members and guardians about medical care, and CHD has done everything possible to ensure all individuals’ health needs are met.”

Phaneuf never received written notice from DDS of the pending closure 

Phaneuf said that in December, she was informed verbally by a DDS official of the termination of the CHD contract for Tim’s group home and the need for him to move to another residence. She said that as of Monday (January 6), she still had not received a written notice from DDS about either of those developments.

CHD a “large, multifaceted organization”

According to its online 2017 DDS licensure report, CHD is “a large, multifaceted organization” that “continues to maintain services throughout western Massachusetts as well as Connecticut.”

As of the start of the current fiscal year, CHD operated 23 DDS-funded group homes in Massachusetts, serving 76 clients, according to data from DDS.

CHD’s most recent online fiscal report to the state, which was for Fiscal 2018, showed that CHD received total operating revenues of $98.4 million primarily from a variety of state agencies, including $9.7 million from DDS.

Questions remain

While the contract termination action by DDS is welcome, it still raises a number of questions, including why the department’s provider licensure system itself did not identify the problems.

Little or nothing was initially done by DDS in response to Phaneuf’s concerns, and no investigations occurred until after COFAR posted about the case last July and there was subsequent coverage about it in The Springfield Republican.

COFAR has never gotten an answer from DDS as to why the normal DDS licensure review of CHD in 2017 did not flag any of the issues that Phaneuf subsequently raised. DDS, as ususal, appears to have reverted to its usual mode of not commenting or issuing any information in response to our queries that isn’t specifically required under the Public Records Law.

As we’ve said many times before, the problems finally identified regarding CHD are not unique to this one provider, but appear to be systematic across the entire DDS provider network. Over the past year, we have met with key lawmakers and with several state agencies, including the offices of the attorney general, inspector general, and state auditor to suggest the need for a comprehensive investigation of the DDS group home system.

Per-client abuse data demonstrate relative safety of state-run residential facilities

December 9, 2019 1 comment

A new per-client analysis by COFAR of abuse data from the state shows that state-run residential facilities for persons with intellectual and developmental disabilities have had below-average substantiated abuse allegation rates and referrals for criminal investigations among providers in Massachusetts.

COFAR first reported in September on our ranking of residential service providers based on raw data from the Disabled Persons Protection Commission (DPPC). That data concerned more than 14,000 allegations of abuse of persons with intellectual and other developmental disabilities.

Since then, we received information from the Department of Developmental Services (DDS) on the number of clients served in both state-run and corporate provider-run group homes and other facilities.

As a result, we have analyzed the DPPC data on a per-client basis. We’ve also combined total abuse data for those providers operating in more than one region of the state.

The per-client data corrects for larger providers, including the regional system of state-operated group homes. The state-operated residences in total serve more clients than any individual corporate DDS provider.

The data show that the total network of state-operated homes, with 1,118 clients, had more abuse allegations in total than other individual providers between Fiscal 2010 and 2019. But on a per-client basis, the state-operated homes dropped down the list of providers, and were well below average in terms of both substantiated allegations and criminal referrals between Fiscal 2010 and 2019.

Also, the Wrentham and Hogan developmental centers were at or near the bottom of the list of total providers in every measure except for number of clients. In Fiscal 2018, both developmental centers still had well above the average number of clients among providers.

Wrentham and Hogan are the state’s only two remaining developmental centers that meet federal standards for Intermediate Care Facility (ICF) services.

The chart below lists our rankings of the top 10 and bottom 10 providers in terms of numbers of substantiated abuse allegations per client and referrals for criminal investigation per client from Fiscal Years 2010 through 2019.  State-run facilities are highlighted to show their relative placements on the list.

(Complete results of our findings can be found in spreadsheets at this link: DPPC abuse data per client FY 10 to FY 19 sorted.)

 

Total subst. complaints and DA referrals per client chart

These findings are in line with our reporting that state-run residential centers and group homes tend to employ staff with higher levels of training and lower rates of turnover than do corporate-run facilities.

Despite that safety record, the Baker administration and administrations prior to it, have reduced funding for state-run facilities in the DDS system, and boosted funding for corporate, provider-run residences.

In addition, DDS routinely fails to offer state-operated homes as an option for people waiting for residential care, and instead directs those people only to openings in the privatized residences.  As a result, those facilities are slowly dying by attrition.

Ranking by number of residential clients

In COFAR’s latest analysis, we re-examined data from DPPC concerning 79 residential providers, 75 for which DDS provided data on the number of clients served. The total providers analyzed included the Wrentham and Hogan Centers.

The total number of clients served in all residential facilities for which DDS provided data was 8,218 in Fiscal 2018.  (Fiscal 2018 was the middle year in the range of years of client data provided by DDS, which was from Fiscal 2016 to 2020.)

As noted, DDS state-operated group homes, combined from all regions of the state, had a total of 1,118 clients in Fiscal 2018, according to DDS records. That is nearly three times the size of the next largest provider, Seven Hills, which had 397 clients.

The total number of clients in provider-run group homes in Fiscal 2018 was 6,692, according to the DDS data. (Data were not analyzed for providers that had relatively few clients.)

At 272 residents and 136 residents respectively, the Wrentham and Hogan Centers had well above the average number of 92.9 residents served by individual corporate providers in Fiscal 2018.

Ranking by number of abuse allegations 

As noted, the entire network of state-operated group homes had the highest number of abuse complaints among providers from Fiscal 2010 through 2019, according to DPPC data.

There were a total of 2,045 complaints involving the state-operated group homes, which was nearly three times higher than for the individual provider with the next largest number of complaints, Vinfen.  But that would normally be expected given the state-operated network is so much larger than any single provider.

The total number of complaints among all residential providers was 14,088 in the period reviewed. The average number of complaints per provider was 178.

Ranking by number of substantiated abuse allegations per client 

When ranked by total allegations of abuse per client substantiated after investigations either by DPPC or DDS, the state-operated group home network fell to 48th on the list, with a per-client substantiation rate of 0.07. That was well below the average rate among providers of 0.13 substantiated abuse allegations per client.

The Hogan and Wrentham Centers were ranked 71 and 72, with rates of 0.01 and 0.00 substantiated abuse allegations per client respectively.

The Judge Rotenberg Center rose to No. 1 on the list, with a rate of 0.55 substantiated allegations per client.

The average rate among providers of substantiated abuse per client was 0.13. (See chart above.)

Ranking by number of allegations per client referred to DA’s

When ranked by the number of allegations referred per client to district attorneys for criminal investigation,  the DDS state-operated group home system fell even further, to a ranking of 50 out of the 75 providers.

The state-operated group home referral rate was 0.12 allegations per client, well below the average among all providers of 0.21 referrals per client.

The Hogan Center was ranked 70th at 0.03 referrals per client, while the Wrentham Center was ranked 75th, at 0.00 referrals.  That was the lowest among providers for which per-client data were available.

The Judge Rotenberg Center stayed at the top of the list, with a rate of 1.5 criminal investigation referrals per client.  That was more than double the provider with the second highest ranking — Becket Family of Services.

Continuing need for transparency

As we’ve said before, we think this type of provider-based data should be made easily available and accessible online by DDS and DPPC. We have continued to urge the Legislature’s Children, Families, and Persons with Disabilities Committee to approve a bill (H.93), which would require DDS to post online information about provider-based abuse data and performance.

We are urging people to call the Children and Families Committee at (617) 722-2011 (for Rep. Kay Khan, House chair) and (617) 722-1673 (for Senator Sonia Chang-Diaz, Senate chair), and ask the committee to vote favorably on the bill.

We also hope that this data will underscore the need for state legislators to recognize the importance of state-run residential care for persons with intellectual and developmental disabilities.

The state-run residential facilities provide an essential backstop of care for persons who are subject to abuse or are simply not able to cope in the corporate-run group home system. Families and guardians should be routinely informed about state-run care as an option, and should certainly not be forced to fight DDS in order to get that option.

When it comes to investigating abuse of the developmentally disabled, it all appears to go around and around

November 25, 2019 2 comments

Charles Dickens named his ultimate bureaucratic agency the Circumlocution Office because the public’s business just got passed around in circles in the department.

At least some of that appears to be going on among state agencies when it comes to investigating abuse of persons with developmental disabilities in Massachusetts, according to a review of public records of three state agencies by COFAR.

It appears to be the case with all forms of abuse that the referral and investigation process starts and ends with the Department of Developmental Services (DDS).

In fact, one of the agencies involved – the Executive Office of Elder Affairs (EOEA) –  referred 25 years ago to the process of investigating abuse involving DDS and Department of Mental Health clients as “circuitous,” and stated that attempts to change it through legislation had not been successful in the previous two years. That memo, which we recently received from EOEA, was written in 1994.

COFAR requested and reviewed data and other information on investigations from DDS, the Disabled Persons Protection Commission (DPPC), and EOEA of financial and other types of abuse. We requested the information from each agency under the state’s Public Records Law.

How the circular process appears to work

The circularity appears to start with the fact that DDS is required by state regulations to report all abuse allegations to DPPC, the state’s only independent agency for investigating abuse of disabled adults. But DPPC lacks jurisdiction to investigate financial abuse, in particular, according to the agency’s assistant general counsel, so it refers those cases back to DDS to investigate.

DPPC also lacks jurisdiction to investigate abuse of the elderly, so it refers allegations of all types of abuse involving persons over the age of 59 to EOEA. But EOEA then also refers those same allegations to DDS to investigate if they involve persons living in DDS facilities, according to EOEA officials we talked to and to the 25-year-old memo.

In the May 6, 1994 memo, then Secretary of Elder Affairs Franklin Olivierre stated that under a then newly effective policy, EOEA would send all abuse allegations referred to it from DPPC to EOEA’s “protective service agencies” for investigation. However, if an allegation involved anyone living in either a DDS or DMH-funded residence, the protective service agencies were advised to contact either DDS or DMH, and, in either case, to “screen out” the allegation, meaning not to investigate it themselves.

“Although both Elder Affairs and DPPC recognize that this system is circuitous, attempts to change the statute through legislation have not been successful in the past two years,” Olivierre wrote.

A bill filed by DPPC at that time would have allowed the DPPC to investigate all reports of abuse of persons in DDS and DMH facilities. That bill never passed, and the circuitous referral process continues to exist to this day.

In other words, while abuse of the developmentally disabled largely occurs in DDS-funded facilities, it is DDS that ultimately ends up investigating most of the cases.

Our diagram below depicts the circular flow of referrals of abuse allegations involving victims with developmental disabilities, according to the records we reviewed.

Abuse referrak flow chart3

Beyond the apparent conflict of interest that DDS has in investigating fraud in its own funded and managed programs, it isn’t clear that DDS has the resources to adequately investigate those cases and all of the other forms of abuse that get referred to it.

No centralized record keeping or tracking

It’s not easy to track the circularity of the abuse referral and investigation process because there appears to be no central record keeping or tracking system for abuse complaints and investigations, whether financial or other forms of abuse. Each agency keeps some of the records regarding the abuse investigation process, but no agency appears to have them all.

For instance, while DDS, as noted, is required to refer all abuse allegations it receives to  DPPC, that latter agency tracks the outcomes of investigations only of those allegations that fall under its jurisdiction.

If DPPC receives an allegation of abuse involving a victim with an intellectual disability 60 years old or older, or receives any allegation involving financial abuse, the agency keeps records of the referral of those cases, but not the outcomes.

DDS has two investigative divisions, only one of which even keeps records on the number of abuse allegations reported to it or referred by it to DPPC, according to a response we received from DDS to a Public Records Request.

EOEA, meanwhile, has no records on the number of abuse allegations it receives involving people with intellectual or developmental disabilities, according to a response from an official in that agency regarding a Public Records Request.

Also, EOEA only began keeping records on the number of abuse cases referred to it by DPPC in Fiscal 2018. Similarly, EOEA only began keeping records in Fiscal 2018 on the number of cases it refers to DDS.

DDS, for its part, said it has no records on cases referred to it by EOEA. 

Tracking financial abuse referrals

Within DDS, it appears there are two separate divisions or units that are concerned with  abuse issues – the Investigation Division, which was established in 1993, and the Bureau of Program Integrity (BPI), which was established in 2018.

According to DDS records, the Investigation Division has a staff of 33, including 26 full-time staff investigators.

The DDS BPI only has 3 people on its staff — a director of internal controls, a senior manager, and a risk analyst. The purpose of the BPI is to support the Investigation Division in its financial abuse investigations, develop internal control procedures for DDS, manage a “DDS Theft and Fraud Hotline,” and related matters.

In response to a Public Records Request that we filed specifically seeking data on financial abuse from Fiscal 2016 to the present, DDS informed us that the department does not keep records on the number of financial abuse allegations received by the Investigation Division. The reason given was that all of those allegations must be reported to the DPPC.

However, DDS does apparently keep those records regarding the BPI. DDS stated that the BPI, which is also required to report all allegations to DPPC, received 62 complaints of financial fraud either directly or via its Fraud Hotline since the BPI was established in Fiscal 2018.

DDS did not explain that apparent inconsistency in record-keeping between the Investigation Division and the BPI.

According to DPPC’s own records, from Fiscal 2016 through 2019, DPPC received 1,172 allegations of financial abuse involving DDS clients. It appears that many, if not most, of those allegations were referred to DPPC either by DDS, DDS-funded facilities, the DDS Investigation Division, or the BPI (after the start of Fiscal 2018).

Between Fiscal 2016 and 2019, DPPC, due to its lack of jurisdiction, reported that it referred 895, or 76%, of those 1,172 financial abuse allegations back to DDS to investigate. DPPC also referred an additional 261, or 22%, of the financial abuse allegations it received to EOEA.

EOEA then appears to have referred those 261 allegations back to DDS as well, although we were not able to verify that number through any of the three agencies’ records.

In any case, it would appear that in cases of financial abuse of elderly persons in DDS facilities, those cases are first routinely referred by DDS to DPPC, which then refers them to EOEA, which then refers them back to DDS.

Text for abuse referral blog post6

Low level of completed financial abuse investigations

Although DDS did not have records on the number of allegations referred to or received by the Investigation Division, DDS did state that the Division “completed” a total of 96 investigations of allegations of “financial misconduct” referred by DPPC to DDS from Fiscal Year 2016 to the date of COFAR’s Public Records Request in September 2019.

It was not clear why DDS would have records of the number of referred investigations that the Investigation Division completed, but would not have records of the number of cases referred by DPPC to the Investigation Division. Given the staffing of each of the two DDS investigative divisions, it would appear that the Investigation Division would or should have investigated most, if not all, of the 895 referrals.

If the DDS Investigation Division completed a total of only 96 out of 895 financial fraud investigations referred to it by DPPC in that 4-year period, that would amount to a completion rate of only about 11% of the cases. DDS substantiated a total of 12 of those 96 allegations.

EOEA and DPPC records may not line up 

Of the 1,172 financial abuse allegations it received from Fiscal 2016 through 2019, DPPC referred 261 of them, as noted, to EOEA, according to DPPC’s response to our Public Records Request. Given that those cases all involved DDS clients, it would appear that EOEA, according to its 25-year-old policy, would or should have referred all of those cases to DDS.

It was actually not possible for us to verify, based on DDS and EOEA records, that all of those 261 cases referred by DPPC to EOEA were, in fact, subsequently referred by EOEA to DDS.

As noted, DDS said it has no records of the number of abuse cases referred to it by EOEA. EOEA, as noted, only began tracking the number of cases referred to DDS in Fiscal 2018.

In fact, DPPC’s and EOEA’s records don’t appear to line up in that respect. EOEA responded to us that in Fiscal 2018, it referred zero abuse cases to DDS. However, according to DPPC’s records, DPPC referred 42 allegations of financial abuse involving DDS clients to EOEA in Fiscal 2018. According to EOEA’s policy, it should have referred those 42 cases to DDS that year.

The solution to the circular referral process lies with DPPC

Our recommended solution to the overall referral and investigation problem is to revive and enact the legislation that DPPC proposed 25 years ago.  DPPC should have the resources and authority needed to investigate all forms of abuse of the developmentally disabled, including persons over 60 years of age.

Right now, the investigative process involving abuse and neglect of persons with developmental disabilities is split among at least three agencies. It is a circuitous system rife with potential conflicts of interest and one in which record-keeping and apparently cooperation in undertaking investigations among the agencies is dispersed and spotty.

We plan to share these findings and our recommendation with the Legislature’s Children, Families, and Persons with Disabilities Committee. The current abuse investigation and referral system appears to be set up for failure and needs to be reformed.

 

A recap of our cases of abuse and neglect in the DDS system

November 18, 2019 7 comments

We receive calls on a regular basis from family members and guardians of persons in the Department of Developmental Services system who are dealing with, abuse, neglect, poor care, and related issues.

We always try to help where we can by offering advice and working with the Department of Developmental Services and other agencies and organizations to rectify the situations, and, in some cases, informing the public about the matters through our blogsite and newsletter.

Below are summaries of some of the major cases that have appeared on this blogsite in recent years. We’re happy to say that at least some of these cases were ultimately resolved favorably for the individuals, families, and guardians involved; but these cases are all disturbing signs of a broken system.

Most, though not all, of the cases brought to our attention have involved incidents that occurred in group homes or day programs operated by corporate providers under contract to DDS. We occasionally get calls about incidents in state-operated group homes, and some of those cases are summarized below. In many instances, however, problems were ultimately solved when victims or other clients involved were transferred from provider-run to state-run facilities.

That’s one reason we have advocated for so long for the preservation of state-operated group homes and the two remaining DDS-run developmental centers. It has been our experience that the rapidly expanding privatization of residential and other DDS services has created a race to the bottom in terms of care and services — a system in which abuse and neglect are rampant.

Every year, as state funding for the provider-run residential line item has risen, the number of abuse complaints received by the Disabled Persons Protection Commission (DPPC) has risen as well. In many cases, the DPPC and other agencies lack resources to adequately investigate these complaints. That is reflected in the individual stories that we hear when people call us.

In one of the cases we’ve included below, a young woman endured poor and in some cases life-threatening care in a series of provider-run facilities and a state-operated residence until she was finally admitted to the Wrentham Developmental Center where the family described her care as “exquisite.” That’s because the state-run developmental centers must meet strict federal standards for care that are waived for facilities in the “community-based” system.

There are other cases recounted below in which family members and sometimes guardians have been subjected to intimidation and retaliation by providers and by DDS after they raised concerns about poor care.  There are even cases in which families and guardians have been barred from entering their loved ones’ group homes or even prohibited from all contact with those family members — situations, which we have argued violated DDS regulations.

Mixed record of official concern

We have continued to raise these concerns with DDS, the DPPC, a variety of other legal enforcement agencies, the media, and advocacy organizations, and with key legislators.

Last year, after one particularly egregious case, recounted below, in which a young man nearly died in a group home after aspirating on a piece of cake, the Legislature’s Children, Families, and Persons with Disabilities Committee, did hold two informational hearings on abuse and neglect in the DDS system. But we have heard of no follow-up on those hearings by the committee.

In another case in which a provider apparently failed to take a resident of a group home for either doctor’s or dentist’s appointments for seven years, the provider acknowledged failures in its protocols and took corrective actions after COFAR brought the case to the public’s attention. In addition, DDS opened an investigation of the provider.

We have continued to ask the Children and Families Committee to approve H.93, a bill that would improve transparency in the DDS system about abuse and neglect. The bill would require DDS to post easily understandable, comparative information on its website about abuse and neglect and provider performance.

One of the cases below, involving the death of Karen McGowen, highlights the lack of transparency in abuse and neglect investigations done by the DPPC, in particular. The agency refused to release any investigative records in the case, and, as we have reported, is trying to further ensure the secrecy of its records.

In the cases summarized below, the families and guardians agreed to go public. Not included are many cases in which we have and continue to advocate on behalf of families and guardians who asked us not to reveal the details of their cases publicly.

Timothy Cheeks: Center for Human Development group home, East Longmeadow, staff neglect

(More information here)

In 2018, Mary Phaneuf, the foster mother of Timothy Cheeks, began raising concerns  about Tim’s care in a group home operated by the Center for Human Development (CHD) in East Longmeadow.

Mary’s concerns included a lack of proper medical care for Tim, 41, and no documented visits to a primary care physician or dentist for seven years. Mary also said there were no documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect.

After COFAR contacted CHD about the matter, the provider’s CEO and president acknoweldged “failures to follow protocols,” among other problems and said the organization was taking a range of corrective actions.  In an August 2019 statement provided to COFAR, DDS Commissioner Jane Ryder said that DDS was investigating the allegations and was requiring the Springfield-based provider to implement a corrective action plan.

Despite the seriousness of the issues that Mary raised, an online June 2017 DDS licensure inspection report for CHD did not mention those or similar problems of neglect in CHD’s group homes.

Tommy Shea: Staffed apartment, staff neglect

(More information here)

Maureen Shea’s son, Tommy,  who was 33, had an intellectual disability and was subject to epileptic seizures while asleep.

Tommy’s bedroom in his staffed apartment was equipped with an audio and visual monitor that could alert the staff so that the staff could make sure that during a seizure he didn’t roll over face-down — a position that can prevent breathing.

Maureen and her daughters were nevertheless concerned that the residential staff did not regularly check the monitor’s batteries and that they had not been adequately trained in how to position the device. But provider managers had repeatedly assured Maureen that the staff were being trained and were knowledgeable about Tommy’s medical equipment.

Tommy had just returned on June 7, 2017, from a two-week stay in a hospital to his apartment. The following day, Maureen received a call from the residential supervisor to come to the residence immediately. When she arrived, the police were there. They told her that Tommy had died and that he had been found face-down on his bed. The batteries in the monitor were later found to be dead.

Maureen is pushing for S.73, a bill, which specifies that when a disabled individual is discharged from a hospital to a residential group home, a licensed medical professional from the group home must review and acknowledge the full requirements of the hospital discharge plan with respect to life support equipment. The medical professional must then advise the group home staff about those requirements.

Family separation case, isolation, family intimidation

( More information here)

In November 2015, a DDS guardian imposed a three-year ban on family contact with a developmentally disabled woman, and specifically prevented David and Ashley Barr, the woman’s father and sister, from visiting her.

The woman has been diagnosed with an intellectual disability and mental illness.

The guardian never clearly explained the reason for her family separation policy, which was nevertheless been upheld by DDS.  For the next three years, the guardian prohibited all members of the family other than an aunt from having any contact with the woman, and would not even inform the family as to where she was living. We have withheld the woman’s name because she was a victim of sexual assault.

In November 2018 email to Ashley, the guardian stated that she was finally granting permission to Ashley and David to visit the 30-year-old woman for the first time since November 2015.

In her email, the guardian wrote that she would now allow visits because the woman’s mother, Nancy Barr, had been sentenced in a criminal case involving the sexual assault of the disabled woman by Nancy Barr’s boyfriend, John Leone. Nancy and David Barr have been divorced since 2003. No members of the family other than the woman’s mother were involved in the abuse or were ever charged in the case.

Karen McGowen: Unexplained death, day program, provider unknown, records kept secret

(More information here)

Karen McGowen, a DDS client, was killed in an apparent accident in November 2017. She reportedly fell from a wheelchair lift while getting out of a van at her Pittsfield-based day program funded by DDS.

The DPPC, which is charged with investigating or supervising investigations of abuse and neglect of disabled adults under the age of 60, confirmed it was investigating Karen McGowen’s death. The DPPC denied all requests from COFAR for the records in the case.

Holly Harrison: TILL, Inc. group home, Danvers, staff neglect and poor care, family intimidation

(More information here)

Despite a state regulation that gives residents of state-funded facilities the right to be visited, a human services provider agency upheld a directive barring a guardian of a developmentally disabled woman from entering her group home.

The August 2017 directive from the provider, Toward Independent Living and Learning, Inc. (TILL), stated in writing that the guardian, Susan Fernstrom, “will not go into the residence” even to bring food or other items to her daughter, Holly Harrison.

It appeared that the only reason for TILL’s prohibition against Susan from entering the home and for a subsequent notice of eviction of Holly was that Susan had pointed out deficiencies in the staff’s compliance with Holly’s medically necessary dietary restrictions on a number of occasions. Susan had also complained about conditions in the residence.

In addition to having an intellectual disability, Holly has a serious genetic metabolic condition called galactosemia, which requires a diet free of galactose, a form of sugar found in milk and cheese. That diet must be strictly adhered to in order to avoid complications including brain and kidney damage. Holly must also eat multiple servings of vegetables because she does not metabolize all the nutrients in her food.

Susan had in the past raised concerns that the group home staff was not following her instructions either in buying food for Holly or preparing and serving it to her. Her complaints appear to have led directly to the issuance of the directive banning her from the residence.

David Buckley: DDS group home, West Peabody, staff physical abuse;  provider-based group home, Hamilton, staff sexual abuse

(More information here)

On the morning of March 30, 2001, David Buckley, received second and third degree burns to his buttocks, legs, and genital area while being showered by staff in a West Peabody-based group home run by DDS. The temperature of the water in the residence was later measured at over 160 degrees.

David died from complications from the burns 12 days later, yet no one was ever charged criminally in the case, and the DDS (then Department of Mental Retardation) report on the incident almost unbelievably did not substantiate any allegations of abuse or neglect.

Before that shower incident, David had endured a series of incidents of alleged abuse and neglect in a provider-run group home in Hamilton, including an alleged sexual assault by a caregiver. That incident had been witnessed by another staff member of the home. Yet, the witness failed to report the alleged abuse for two weeks, and, as a result, no one was ever criminally charged in that case either.  

Alexa Horn: Multiple residences, abuse neglect. Care at Wrentham Center deemed “exquisite.”

(More information here)

Alexa Horn , who has Rett Syndrome, a neurological disorder, had lived at home until she was 16. At that time, her parents, Pat and Michael, explored the possibility of getting Alexa into the Fernald Developmental Center, but they were told Fernald was closing.

Pat said she and Michael found a special needs residence for Alexa, but she developed a urinary tract infection and a subsequent sepsis infection there. The infections occurred after direct-care staff failed to tell the facility’s nursing staff that Alexa had not eaten or drunk anything for almost 24 hours.  Alexa was cared for in the intensive care unit at Boston Children’s Hospital for two weeks and was transferred to Franciscan Children’s Hospital for six weeks of rehabilitation.

When she turned 22, Alexa was placed in a DDS-funded group home near her family home in Watertown in which the care was quite good for a number of years. After five years, however, the residence started to experience a high degree of turnover of house managers, and new direct care staff were hired with little apparent training or qualifications.

Pat said the residence became dirty, clinician appointments were missed, protocols for administering Alexa’s medications and her feeding tube were not followed, and her personal hygiene degraded to the point that she had to be treated for ringworm, a type of fungal infection of the skin, on numerous occasions.

In 2014, Alexa fell out of her shower chair while a staff member was showering her because the staff member had undone her safety belt in order to wash her back. Her injuries required a trip to the emergency room and an MRI. Miraculously, Alexa did not sustain any serious injury in that incident, but she did suffer a significant amount of soft tissue damage to her face and broken blood vessels in her eye.

In another incident, the same caregiver failed to check the rate of the feeding pump when setting up her g-tube feed, and Alexa received 12 hours worth of food in a two-hour period, causing her to vomit and aspirate.

Early 2015, Pat said, she was informed by staff during a weekly Saturday visit that Alexa’s leg had been hurting her since the beginning of that week, but that the house manager had not taken her to be assessed by her doctor. The Horns called the manager on duty that weekend, who finally took Alexa to a hospital emergency room where an x-ray confirmed that Alexa had a fracture of the tibia.

The Horns then arranged to have Alexa sent to the Marquardt skilled nursing facility on the grounds of the then closed Fernald Center rather than to have her discharged back to the group home.

During her first months at the Marquardt, as she was recovering from her broken arm, Alexa contracted pneumonia and respiratory failure. After two weeks on a respirator at Mt. Auburn Hospital, she was transferred to a rehabilitation hospital where she contracted a ventilator-acquired pneumonia and a gastrointestinal infection, and suffered from serious seizures because of the medications given to combat the infection. After two and half months, she was finally well enough to be transferred back to Marquardt.

In August of 2016, the Horns learned that the Marquardt center was going to be closed, and Alexa finally became a resident of  the Wrentham Developmental Center in February of 2017. They termed the care at Wrentham “exquisite.”

Ryan Tilly: NEEDS Center, Inc., abuse and neglect, family intimidation, group home in Haverhill

(More information here)

Ryan Tilly, who has Down Syndrome, had been living in his provider-operated group home in Haverhill for only four months in March of 2016 when he was allegedly assaulted by a staff member of the residence.

The Tillys maintain that in addition to the assault, Ryan was subjected to neglect in the group home, which is operated by the NEEDS Center, a DDS provider.  He was also harassed by another resident of the group home so severely in 2016 that he continued to isolate himself in his room there and was afraid for a period of time to take showers in the residence.

Rather than working with the family to address those problems, both NEEDS and DDS initially turned against the parents, according to the Tillys and to documents in the case. The Tillys were accused of being “volatile and unpredictable,” and of fabricating a charge that the staff was failing to clean clothing that Ryan had soiled.

Ryan’s father, Brian, was banned for months from visiting Ryan in the NEEDS residence, while Deborah had to make appointments in order be able to see him.

A DDS investigation of the Tillys’ allegations regarding Ryan’s clothing determined that there wasn’t sufficient evidence to charge the group home with neglect in the matter; but the report did not refute the allegations.

In September 2016, DDS recommended that NEEDS and DDS meet regularly with the Tillys to “foster cooperation,” and that DDS explore possible new residential options for Ryan. But neither NEEDS nor DDS appear to have fostered that communication, at least initially. The restrictions against the Tillys on visiting Ryan in the group home continued through at least October of 2016, according to emails from the provider.

Yianni Baglaneas: Bass River, Inc., neglect, cover-up, group home in Peabody

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In April 2017, the staff of a group home in Peabody failed to react for nearly a week after Yianni Baglaneas, 29, reportedly aspirated on a piece of birthday cake in the residence. Yianni was admitted to Addison Gilbert Hospital in Gloucester in critical condition, and spent 11 days on a ventilator and a week in the Intensive Care Unit at Mass. General Hospital.

According to a DPPC report on the incident, the residential director of the group home acknowledged instructing staff of  the residence not to cooperate with the DDS investigation into the matter. The director also acknowledged removing records from the facility.  The DDS investigator was subsequently unable to locate key records relating to Yianni’s care.

The DDS report stated that charges of abuse and mistreatment were substantiated in the case against seven employees of the provider, Bass River, Inc. The report found that the group home staff was negligent in failing to ensure that Yianni, who has Down Syndrome, regularly used a portable breathing mask at night called a CPAP (continuous positive airway pressure) machine. Based on the input of a medical expert, the report concluded that the failure to use the machine was the cause of the aspiration that led to Yianni’s near-fatal respiratory failure.

Andy McDonald: Family intimidation

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DDS has ignored requests by the parents of Andy McDonald for a new clinical evaluation of  Andy, who was deemed too dangerous in 2006 ever to be allowed to visit his family home in Sherborn.

Since Stan and his former wife voluntarily relinquished their guardianship of Andy in 1986 as part of a custody battle, Andy, who is intellectually disabled, has lived under a series of court-appointed guardians.  Like many people who lose or fail early on to secure guardianship of developmentally disabled members of their families, Stan and his current wife, Ellen, have been repeatedly stymied in their efforts to obtain that guardianship.

Stan and Ellen are rarely even informed about major events or issues regarding Andy’s guardianship; and the Middlesex County Probate Court failed for six months in 2016 to appoint an attorney to represent Andy, as required by law.

COFAR is supporting a bill (H.1415), which was first filed in 1999 on behalf of the McDonalds. The bill would require probate court judges to presume that the parents of developmentally disabled persons, or third parties designated by the parents, are suitable as guardians for those individuals. Despite no known public opposition, the bill has never been approved by the Judiciary Committee.

 Anthony Remillard: Templeton Developmental Center; and Brett Reich, Lifeworks, group home in Attleboro, neglect and lack of supervision by DDS and the provider

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Brett Reich and Anthony Remillard are both men with intellectual disabilities, and both either served prison time or were faced with prison time for committing assaults. In each case, DDS appears to have failed to provide adequate supervision and treatment for them.

Unidentified man, Lowell General Hospital, neglect, lack of training

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A 2012 report by the state Department of Public Health exonerated Lowell General Hospital in the case of an intellectually disabled man who died of an apparent heart attack in 2012 after having been sent home twice by the hospital without any significant treatment.

The DPH report confirmed that the 51-year-old patient was discharged twice from the hospital in two days, and was pronounced dead after he was brought back to the hospital for the third time.

Despite the exoneration, the report appeared to leave many questions about this case unanswered — particularly whether the man, whose identity has been withheld, may have received inadequate care because hospital staff was not properly trained in dealing with developmentally disabled people.

This was one of three cases that were brought to COFAR’s attention in 2011 and 2012 in which DDS clients, 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 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.

In a third case, a 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.

Paul Stanizzi: DDS Northeast Residential Services group home in Chelmsford, abuse; previously, Edinburg Center group home in Bedford, neglect and possible abuse

(For more information here  and here)

In February 2019, two staff members of a DDS group home were arrested for allegedly hitting and slapping Paul Stanizzi, a 50-year-old intellectually disabled man who is non-verbal.  This was the second residential facility in which Paul was allegedly injured or assaulted by staff.

In June 2014, the DPPC substantiated charges of abuse and neglect against a staff worker in a Bedford, provider-run group home in which Paul was seriously injured the previous August. Paul was at least partially paralyzed in that incident in that residence, which is operated by The Edinburg Center, Inc.  According to a DPPC report on the incident, Paul 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 Paul’s room during the night, but never investigated them and then fell asleep for several hours during his shift.

Paul, who is non-verbal, was taken to Lahey Clinic in Burlington, which determined he had a spinal injury.  No group home staff accompanied Paul to the hospital, according to the report.

Sara Duzan: Becket Family of Services, Inc. group home in Westminster, abuse, neglect, family intimidation

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In 2013, a DDS guardian issued an order forbidding the family of Sara Duzan, a woman with an intellectual disability from all communication with her.

Members of the Duzan family said they were concerned that Sara was been subjected to abusive physical restraints and seclusion at the Becket residence, but that they had had no way of knowing what Sara’s care and living conditions really were.

Sara, then 21, has a rare genetic disorder called Smith Magenis Syndrome, which is characterized by intellectual disability and behavioral outbursts. The Duzans lost their guardianship of Sara in 2009, stemming from both an admission by Sara’s mother, Maryann, that she once lightly slapped her daughter on the cheek, and the conclusion of a probate judge in 2010 that while the family had never abused Sara, they had been uncooperative with providers in caring for her.

John Burns: Center for Human Development, Alleged Abuse

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In August 2012, a jury acquitted a staff member of a group home operated by the Center for Human Development (CHD) in Springfield of allegedly assaulting John Burns, a man with an intellectual disability, during an outing on Cape Cod for clients of the home.

Sheila Paquette, of Westfield, Burns’ sister and guardian, ultimately filed the assault charge against the staff member herself in July 2010 when she became convinced no law enforcement agencies were going to do so.

It was only after Paquette filed the charge that the DPPC sent a state trooper to her house to investigate, she said. Despite that, the case languished for months at a time, beset by bureaucratic snafus and witness no-shows that caused the trial to be postponed four times.

When the trial finally took place, the District Attorney’s prosecution effort seemed half-hearted. Among other questions COFAR had about the case was why no one from the DPPC or its state police unit was called to testify at the trial.

The DPPC had issued a comprehensive report on the incident in February 2011, which did find sufficient evidence to conclude that Burns was “seriously injured” by the caregiver.

Tholda Chhom: Northeast Residential Services, Chelmsford, lack of supervision

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In June 2011, a resident of a state-run group home in Chelmsford walked out of his residence, went next door and attacked a pregnant woman as she was sitting in her living room with her husband and three-year-old daughter.  The man managed to tear off Amy Hillman’s shirt and jump on top of her before he  was pulled away by Hillman’s husband, James.

The group home resident, Tholda Chhom, and James Hillman ended up in the front yard, where Chhom continued to charge at Hillman before running back to his residence just before police arrived, according to witnesses.  Chhom was later charged with assault and attempted rape, and was then placed in a “more secure state facility,”  according to The Lowell Sun.

COFAR is concerned that this case shows that even state-run community residences lack an intensive care model that meets the federal standards set for Intermediate Care Facilities.  ICF-level care, which exists only in two remaining developmental centers in Massachusetts – the Wrentham and Hogan Centers — stipulates that residents receive onsite clinical, medical, and nursing care and full-time supervision.  Not everyone with intellectual disabilities needs this level of care.  Only a small fraction of them do.  But Chhom would appear to be one of them.

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