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Mother, who was charged with abuse after giving son Tylenol and cough syrup, says he is being neglected and isolated in his group home

January 19, 2022 8 comments

Christine Davidson, who has been charged by the state with abuse after she gave her son prescribed cough syrup and Tylenol, says the real problems her son is facing include isolation and neglect in his group home.

We have joined Christine in expressing concern to the Department of Developmental Services (DDS) about conditions in the residence and a ban on home visits from her son John.

John Davidson is a resident of a group home in Waltham, which is run by WCI, Inc., a corporate provider to DDS. Christine contends that the conditions under which John is now living violate a number of DDS regulations referred to as “standards to promote dignity” (115 CMR 5 et seq.).

Christine is a co-guardian of her son. The other co-guardian, George Papastrat, is Christine’s nephew and lives in North Carolina.

Christine wants to take John back home with her, and John has repeatedly said he wants to come home. That is not being permitted, however. She said John is effectively being confined in his group home with virtually no activities.

As we noted in a recent blog post, we have raised numerous questions about the accuracy of a report written by the Disabled Persons Protection Commission (DPPC), which concluded that Christine abused her son after she gave him an “undetermined” amount of cough syrup and Tylenol last June. Since then, John has been subject to a prohibition on visits home based on the abuse finding.

Christine’s attorney, Thomas Frain, who is also COFAR’s president, has filed an appeal with DPPC of the abuse finding.

Last November, I emailed George Papastrat, John’s other co-guardian, with an explanation of our concerns about the DPPC investigation and its apparent bias against Christine. I have not recieved a reply to my message.

Only person left in the home during the day

Christine said she visited John in his group home yesterday (January 18), and found him sitting alone in the kitchen. She said the other three residents currently living in the home are being taken to day programs.

John no longer has a functioning day program, according to Christine. An Individual Support Plan (ISP) states that he lost his previous day program activities at Jewish Family Chai Works in Waltham in March 2020 because of COVID restrictions.

The ISP states that when the day program reopened on a limited basis in August 2020, John was not alowed to return to it. The ISP does not specify the reason he was not allowed to return.

Christine also said John’s physical therapy services, which he received after fracturing his leg outside his group home in 2019, have been discontinued. Yet, she said, he is still in need of those services.

Personal hygiene allegedly neglected

Christine said she often finds John’s bedroom and the bathroom in the group home to be dirty, and John is frequently unshaven and dirty when she visits him. She provided photographs of his bed, which show several damp spots that she said are urine.

She also sent a photo of what appears to be soiled toilet paper in a waste can in the bathroom. She said the toilet paper contained fecal matter.

Christine filed a complaint with DPPC on December 7 after finding Jonn sitting alone and naked on the floor of his bedroom, apparently after he slid off his wheelchair while under the care of a staff member. The complaint has been referred to the DDS area office for an administrative review, according to a letter sent by DDS to Christine on December 8.

As noted below, many of the conditions Christine described would appear to violate DDS “standards to promote dignity,” including the “opportunity to undergo typical developmental experiences.”

Christine said she believes John is declining physically and mentally in the group home and is severely depressed. “I don’t know if he’ll ever be the same person he was — energetic and engaging,” she said.

DDS doesn’t respond to concerns

On January 10, I sent an email to Joan Thompson, DDS area director, calling her attention to the apparent violations and asking that the Department investigate them.

Thompson responded the following day with a two-sentence email that did not appear to relate to my request. Thompson’s email stated the following:

After review of your request, you would need written authorization from both (co)guardians to release any information.  Without the written authorization, you do not have the authority to make such a request.

Thompson’s message wasn’t signed.

I reiterated my request in a second email on January 12 and copied Gail Gillespie, the DDS director for the Boston Metro Region. I haven’t received a response to that message from either Thompson or Gillespie.

Apparent violations of DDS regulations in group home

Christine said that after his hospitalization, John was kept for months at Tewksbury State Hospital, ostensibly for treatment of a leg injury from a fall outside his group home in 2019. But she said his leg actually got worse at Tewksbury, yet he was discharged to his group home where he now needs a wheelchair.

She said the group home staff does not appear to be encouraging John to get exercise. She added that John wants to get out of his wheelchair, but the staff are not encouraging him to do so or helping him.

When John was discharged from Tewksbury in November, the group home staff was supposed to develop a chart listing weekly activities for him. But Christine said no such chart has been developed for him.

We are concerned that this overall situation may violate a number of DDS standards to promote human dignity, including a number of the “general principles,” which state that services are supposed to be provided in a manner that promotes:

  • The opportunity to undergo typical developmental experiences, provided that the person’s safety and well-being are not unreasonably jeopardized,
  • The opportunity to engage in activities and styles of living which encourage and maintain the integration of the person in the community through individualized social and physical environments, and
  • Opportunities for daily recreational activity and physical exercise, as appropriate to the age and interests of the individual.

The apparent confinement in the group home against John’s stated wishes appears to violate additional DDS standards and other rights that are intended to promote or include:

  • Self-determination to the person’s fullest capacity,
  • Least restrictive care, and
  • The right to be visited and to visit others under circumstances that are conducive to friendships and relationships.

ISP specified activities 

John’s Individual Support Plans (ISPs) in both 2019 and 2020 discussed his enthusiasm for his day program at Chai Works. As noted, he lost that program in 2020.

John’s 2020 ISP stated that while at the day program, which he had attended since 2012, he participated in numerous activities including dance, yoga, and martial arts. He was also taken on community outings.

The 2020 ISP stated that after the day program was initially shut down in March 2020, John was able to participate in online groups connected with the program a couple of days a week for an hour or two at a time. Accoring to the ISP, John needed help logging in to the online sessions.

Christine said she was told at both Tewksbury State Hospital and at the group home that they were too short-staffed to help him log into the day program sessions. As a result, John has not been able to participate in his day program, even online, for at least the past six months, she said.

Additional conditions in group home

Christine also said that in addition to the problems with cleanliness in the home, she discovered that other residents’ laundry is repeatedly put in John’s dresser drawers even though all of his clothing is labeled.

The overall situation appears to violate the principle specifying “freedom from discomfort, distress, and deprivation which arise from an unresponsive and inhumane environment.” There also appears to be a violation of John’s additional right to “individual storage space for personal use.”

Further, according to Christine, John’s cell phones have repeatedly gone missing, first at Tewksbury and later at the group home. As a result, he is unable to make or receive calls directly from Christine or anyone else.

Christine said she has also been told not to call the group home after 6 p.m. All of that appears to violate the right of individuals to have “reasonable access to a telephone and opportunities to make and receive confidential calls…”

John’s 2020 ISP and an August 2020 staff memo noted that John liked to talk to his mother on the phone, so much so that a protocol was established to end the calls at 10 p.m.

DDS needs to change course

In my January 10 email to DDS Area Director Thompson, I requested that DDS revisit and reverse the prohibition placed on John’s visits home. As noted, I have not received a response to that email.

We are also requesting that the area office expand its review of Christine’s complaint in December after she found her son on the floor of his room. We are urging the Department to examine the overall conditions under which John is currently living and the potential violations of the Department’s regulatory standards.

Questions surround state’s abuse finding against mother who gave her son prescribed cough syrup and Tylenol

January 3, 2022 29 comments

Christine Davidson is known by her family and friends to be devoted to her 45-year-old son John, who has an intellectual disability and numerous medical issues.

“Christine is a dedicated mother who has steadfastly kept John as her number one priority,” Pat Diianni, a friend who has known Christine for nearly 40 years, wrote in a letter of support for her last year.

Pat said Christine has consistently worked over the years to ensure the best possible care for her son in the Department of Developmental Services (DDS) system.

Christine herself says John is “the focus of my life. Everyone knows that I’d go to any lengths for him.” By all accounts, John loves her equally, and has told his caregivers that he wants to be home with his mother.

Christine and John Davidson

State alleges abuse by mother and restricts contact with son

But the state Disabled Persons Protection Commission (DPPC) and DDS concluded in October that Christine abused John because she “more likely than not gave (him) an undetermined amount” of Tylenol and cough syrup with codeine while he was home with her for a weekend visit last June.

In a 20-page report, a DPPC investigator concluded that Christine also failed to provide prescribed breathing therapy support “causing (John) to lose consciousness” in the morning of June 21. The prescribed therapy was the use of a Bi-PAP breathing assistance machine at night.

Christine was unable to wake John up in the morning of June 21, and called 911. John was brought to the Newton Wellesley Hospital ER. He quickly recovered after being given oxygen.

The DPPC is a state agency that is charged with investigating abuse and neglect of adults under 60 with disabilities.

Following the DPPC investigation, DDS issued an “action plan” that recommended sharply curtailing contact between Christine and John. All visits to Christine’s home have been suspended, and all of Christine’s visits to the group home have to be scheduled and supervised, despite the fact that Christine is John’s co-guardian. John was not even allowed to go home to visit Christine at Christmas.

Questions about accuracy and completeness of DPPC report

But following a review of the DPPC report and related documents, and an interview of Christine,  COFAR is questioning the completeness and accuracy of DPPC’s investigation of the incident leading to John’s hospitalization.

Most importantly, both the cough syrup and Tylenol medications had been prescribed by John’s primary care doctor, according to Christine and to medical records, and Christine maintains that she has always followed the prescriptions.

There was no evidence presented in the DPPC report that Christine did not follow the prescribed doses in administering each medication to her son.

As for the failure to use the Bi-PAP machine, Christine says that such a machine wasn’t delivered to her house until June 22, the day after John’s episode of hypoxemia or low oxygen level. She also said she did not receive necessary training in how to use the machine. When she inquired of a group home staff member about receiving training, she said she was told there would be no opportunity for her to do that.

Christine said the machine was later removed from her home by a group home staff, and that she later saw the machine’s breathing mask on the floor of John’s room, dirty and apparently unused. She said when she brought that to the attention of the staff, they did not respond to her.

Christine’s son’s group home is run by WCI, a DDS provider.

Christine, who cooperated with the DPPC investigation, told the investigator she gave her son prescribed cough syrup over that weekend because he had a history of a chronic cough and “has a tendency to cough so much he can’t breathe.” She said she gave him Tylenol as prescribed for arthritis pain.

Following his hospitalization in June, John was admitted in early August to Tewksbury State Hospital due to continuing leg pain stemming from a fracture caused by a 2019 fall outside his group home. He was kept for months at Tewksbury State for unclear reasons, and was discharged back to his group home only at the end of November.

Since August, Christine and her partner, Carmine Tocco, have wanted John discharged home to them. John also strongly expressed his desire to the DPPC investigator to go home to his mother.

Christine and Carmine said they believe that Tewksbury State Hospital was not an appropriate setting for John, and said they have seen signs that he was neglected there and in his group home, and has suffered physical and emotional abuse.

In the 40 years of John’s life prior to his admission to the WCI group home in 2017, he had lived at home with his mother.

Mother lost sole guardianship last year

Christine said DDS petitioned in probate court in May of 2020 to remove her as her son’s sole guardian after she got into a dispute with the Department over the placement of her son in a new group home.

Christine engaged Tom Frain, who is also COFAR’s president, as her attorney, and was ultimately restored to full guardianship. Her nephew, George Papastrat, who lives in North Carolina, was later appointed as co-guardian, with the medical and residential decision making powers.

We are concerned that DDS and DPPC appear to be setting the stage to remove Christine as co-guardian. Frain assisted Christine in appealing the DPPC abuse finding.

Friends, colleagues, and family cite mother’s devotion to her son

Amelia Lawless, Christine’s sister, stated in a letter of support for Christine in June 2020, during her fight to regain her guardianship, that, “(John) and his mother are a real team – they cry, laugh, and work well together. You might say that they complete each other.”

That same month, Rachel Geller, a former behavioral specialist in the Waltham Public School District, noted in a letter that Christine had worked in the school district as a special education teacher, and described her as “enthusiastic, kind, and loving…There are many wonderful teachers. Ms. Davidson stood out,” Geller stated.

Geller added that, “I have found Ms. Davidson to be sincere, hard-working, diligent, and of high moral and ethical standards.”

Father Fred Mannara, who was Christine’s parish priest for 57 years, wrote that, “John has a person in his life, his mother, who knows him and shares his history and loves him dearly. John knows that he belongs.”

Denise Cerrati, another friend of Christine’s for more than 40 years, wrote that, “John is the remarkable, resilient young man he is because of his mother’s care and undying attention to his needs… It would be a great injustice to restrict John’s life in such a way as to not allow him to draw on the strength and love he has always known.”

Milestones in advocacy for John

A former Special Education teacher in the Waltham school system, Christine enrolled John in an Early Intervention program at the Shriver Center prior to preschool, and later enrolled him at the LABB Educational Collaborative from which he graduated in 1998.

Christine found a speech therapist and reading tutor for John when he was an adolescent. She arranged for swimming lessons for him and watched him win two gold medals in an 800-meter swimming event at the Special Olympics International Games in 1991.

Christine encouraged John’s love for dance; and John performed for several years at a local dance studio.

In addition, Christine arranged for John to work at Brandeis University in a paid job in maintenance that lasted for 13 years.  And she found a volunteer position for John with Chai Works in Waltham, a program for persons with developmental disabilities. “He was very proud of that job,” she said. “He never missed a day.”

John also helped Christine in campaigning for Joe Kennedy II in his run for Congress in her Waltham district in the late 1980s.

In 2009, Christine began working with a priest to arrange for a special dispensation to have John receive the sacrament of confirmation as an adult. He was confirmed in 2014.

Christine was also a frequent speaker at family events organized by the Greater Waltham Arc. The Arc sponsored the Brandeis job that John held, starting in 1998. When that job lost funding at Brandeis, Christine contacted Waltham city officials who were able to find the funding needed to keep the job going.

No conclusive cause determined for hypoxemia

Doctors at Newton Wellesley Hospital who were interviewed by DPPC did not appear to have provided the investigator with a conclusive cause of John’s episode of hypoxemia on June 21.  One doctor stated that John may actually have been aspirating when he was brought to the hospital, meaning he was actually choking on something.

We have seen a number of cases in which individuals have aspirated or choked on ingested objects for a period of a week or more before being taken to a hospital. Christine said she thinks it is possible that her son was aspirating on something he had ingested while at his group home before his visit home to her.

While the DPPC concluded that John’s hypoxemia was more likely than not caused by a combination of Tylenol, cough syrup, and lack of a Bi-PAP machine, the report specifically concluded that the amount of the two medications given to John was “undetermined.”

In an appeal filed with the DPPC on November 29 of the agency’s abuse finding, Attorney Frain stated that it is Christine’s position that “the preponderance of evidence does not support the conclusons reached by the investigation report.”

Questions about enlarged liver

One Newton Wellesley hospital official told the DPPC investigator that Christine’s son had an enlarged liver, which was likely caused by a drug toxicity. The official said, however, that John’s Tylenol levels were not elevated when he was examined at the hospital.

Nevertheless, the hospital official said that toxicity in John’s liver could be due to small amounts of Tyleol built up over time. The official stated, “I have every suspicion that (John) took too much Tylenol, but I wouldn’t go to court to testify on that.”

But given that Christine’s son had only been with her over the weekend of June 18 to June 21, when he was hospitalized, Christine said she thinks it is possible that any toxicity buildup in his liver from Tylenol use could have happened previously at the group home. The DPPC report did not mention that possibility.

Witness confirms John had chronic cough

An official from Brigham and Women’s Hospital confirmed to the DPPC investigator that John had had “a chronic intermittent cough for many years.” The hospital official also said that John’s “cough syrup prescription had not raised many concerns prior to latest hospitalization.” Christine said she knows of no concerns that were ever raised about it.

Charge that Christine didn’t know dosages lacks specifics

Much of the case for the DPPC’s abuse charge appears to rest on accounts by the unnamed Newton Wellesley Hospital personnel that Christine couldn’t remember the dosages of the cough syrup and Tylenol that she had given John.

But even if that were the case, Christine maintains it would not prove that she had given her son too much of those medications. She told the DPPC investigator that she has always followed the doctor’s prescriptions regarding medication that she has given her son.

Christine said that she volunteered information to the EMTs who answered her 911 call about the medications John was taking, and gave them a list of all of his medications. She said that she has been giving John his medications throughout his life, and has always followed the written prescriptions.

John’s cough syrup and Tylenol had been prescribed

John’s cough syrup and Tylenol had, in fact, been prescribed for him, according to medical records examined by COFAR.

Those medical records were apparently not reviewed by the DPPC investigator who indicated in the report that the only medical records reviewed were Newton Wellesley Hospital records and John’s Individual Support Plan. [DPPC regulations (Section 1(k) of 118 CMR 5.02) require “the review and obtaining of copies of all documents which are not plainly irrelevant to the matter under investigation.” (My emphasis.)]

According to the records reviewed by COFAR, Tylenol and Tussionex cough syrup containing Hydrocodone were prescribed for John going back as far as January 2020.

Frain stated in his appeal that the cough syrup with Hydrocodone had been prescribed for the past 15 years, and had been administered by Christine to John since that time without incident.

Frain also noted that the DPPC report did not make clear that there were actually two prescriptions for the cough syrup for John. One — Mucinex DM Max Strength — was used by the group home, and the other — Tussionex with Hydrocodone — was used by Christine.

Frain said the reason for the separate prescriptions was that no cough syrup with a narcotic could be safely stored or administered in the group home. But that confusion was used by the DPPC report, Frain said, “to insinuate that there was wrongdoing on Ms. (Christine) Davidson’s part.”

Bi-PAP machine was not used by the group home

The DPPC report stated that the Bi-PAP machine had been prescribed for John to use at night to help him breathe. John had been diagnosed with severe apnea, according to the report.

As noted, Christine said the Bi-PAP machine was not delivered to her home until after John’s hospitalization, and that the group home later removed it.

The report did note that while it appeared the group home did have a B-PAP machine for John, the staff rarely if ever used it. The Brigham and Woman’s Hospital official told the investigator that:

I’m not sure you can blame this (failure to use the Bi-PAP machine on (Christine). Some sleep doctor must have prescribed it years ago. (John’s) usage has been spotty forever…I don’t think the group home even used it…

John could not be awakened previously

In his appeal of the DPPC report, Frain noted that in two previous incidents in the months prior to June 21, John was found non-responsive. In those incidents, on February 17 and during the “April/May time frame,” John was in the care either of his group home or a medical provider. Yet no report of abuse was filed with DPPC or DDS.

In the February case, medical staff at the Mass General Infusion Center in Waltham noted in on a medical form that John was “very sleepy in infusion…Quite lethargic.”

The DPPC report did not mention either of those previous incidents, either or both of which Christine believes could have a bearing on the cause of the incident in June.

No reaction to Narcan

According to the DPPC report, when EMTs arrived at Christine’s home on June 21, after Christine found John unresponsive, they administered Narcan “without effect.” Narcan is a medication used to counteract decreased breathing in an opioid overdose.

The report didn’t discuss whether John’s lack of reaction to Narcan might rule out the cough syrup as a cause of his hypoxemia. Narcan will not have an effect if there is no opioid in a person’s system.

Disputed statements about leg injury and air mattress

Also in the DPPC report is a statement by John’s DDS service coordinator that John had previously broken his leg while in Christine’s care.

The report, however, stated that in a follow-up interview to “clarify” that charge, the service coordinator acknowledged that Christine’s son had broken his leg in December 2019 when he slipped and fell outside his group home after direct care staff failed to greet John as he arrived with a transportation provider. It is undisputed that John was in WCI’s care at the time, and not under his mother’s care.

The report further stated that the incident in which Christine’s son broke his leg was not reported to DPPC because “the incident was witnessed and no one appeared at fault.” The investigator didn’t question that apparent breach of DPPC’s reporting statute and regulations.

According to the report, John refractured his leg in February 2020, possibly while at Christine’s home. However, the report stated it could not be determined whether that second fracture was due to a fall or to failed hardware in his leg stemming from the repair of the first facture.

Christine and Carmine also dispute an apparently second-hand claim in the report, apparently by the service coordinator, that in February 2020, an unidentified person had seen John sitting on a deflated air mattress on the floor in her home. Christine and Carmine said that not only does her son have an upstairs bedroom with a bed in it, but they put a second bed into a downstairs bedroom for him because he was having trouble walking.

Christine said she has never had an air mattress in her home. Carmine sent us the photo below of Christine’s son’s downstairs bed.

John Davidson’s downstairs bed in Christine’s home. John’s DDS service coordinator implied to the DPPC that John had been forced to sleep on an air mattress.

The investigator acknowledged in her report that she had not visited Christine’s home, citing COVID restrictions.

DPPC report relied on negative speculation about personality

In addition to accounts from the unidentified Newton Wellesley Hospital personnel, assertions about Christine’s temperament were included in the report from John’s DDS service coordinator, a DDS program monitor, and a DDS area office nurse. Only one staff member of his group home was interviewed, and that interview does not appear to have been about Christine’s alleged behavior toward the group home staff.

The service coordinator, for instance, described Christine in the report as “crafty and manipulative.” No example of that is given.

COFAR has in the past found that in investigating allegations of abuse, DPPC and DDS have discounted information provided by family members of clients. In some cases, the agencies have made negative assertions or taken punitive or even retaliatory actions against family members seen as meddlesome or too aggressive in their advocacy for their loved ones. (See here, here, herehere, here, here, here, here, here, and here.)

Assessed as frail and elderly

At least one of the Newton Wellesley Hospital personnel and Christine’s service coordinator described Christine to the DPPC investigator as “frail,” while the service coordinator also described her as “in her mid-70s and elderly.” The Newton Wellesley Hospital official also said Christine was using a wheelchair in the hospital.

Christine responded to us that she used a wheelchair temporarily in the hospital because she was recovering from back surgery at the time. She said she no longer uses a wheelchair. She added that she resents being characterized as frail, in particular. “It’s like calling someone fat or too skinny,” she said. “They don’t want me in the picture. They don’t want my involvement in John’s medical care.”

Staff actually rude to Christine

In her own contemporaneous handwritten notes, Christine wrote that on July 29, staff in John’s group home were “ rude” to her, and that one had “abruptly snatched snack from my hand.” She said she had brought the snack of yogurt and lemonade to give to John. She also wrote that the staff were giving him “no choice in (TV) channels.”

On July 30, she wrote that, “John’s bed, blanket, and pillow soaked with urine.”

In early August, she wrote in her notes that, “I would be remiss not to speak up for him — elderly and disabled have no voice.”

Christine praised staff member in notes

Despite the negative assessments of Christine’s relationship with the group home staff, her written notes from July 8, 2019, include praise for a staff member named Mohammed. In her notes, she stated after Mohammed’s name: “Humor attention to detail, kindness empathy, helped John shave.” Christine said Mohammed left the group home more than a year ago.

Visits with mother considered a negative

The DDS program monitor indicated to the DPPC investigator that both DDS and the provider thought Christine was visiting her son in his group home and taking him home for visits too often. “Weekend visits would turn into weeks,” the DDS official said. “(John) couldn’t gain a foothold in the group home.”

“We have been walking a fine line and have done everything we can do,” the DDS official said. (Christine) will always find a reason to bring (John) home.”

The DPPC report, however, includes no reasoning or discussion as to why frequent visits and contact with John’s mother would necessarily be bad for him. DDS regulations, in fact, support “least restrictive care” options, meaning options that honor the wishes of clients to interact with family, friends, and the greater community.

DDS regulations (115 CMR 5 et seq.) also state that “Arrangements shall be made for private visitation (of DDS clients) to the maximum extent possible.”

Report acknowledges son’s wish to return home

The service coordinator stated to the DPPC investigator that Christine and her “family attorney (Frain) have lost sight of (Christine’s  son’s) individual rights.”

Ironically, the DPPC investigator stated that when she interviewed John, he expressed a strong desire to go home from Tewksbury State Hospital to his mother. There was no discussion in the report about taking his wish into account.

Lack of contact, communication

Christine maintains that while John was at Tewksbury State Hospital, her contact with him was sharply constrained for unclear reasons. While she was allowed to visit him there, she said the visits were supervised and she was not allowed to ask him or the staff questions.

She also said John’s cell phone went missing almost immediately after his admission to Tewksbury, and she was unable to call him. She said the DPPC investigator never asked her about that situation.

Neglect alleged at Tewksbury Hospital

Christine and Carmine said that when they initially visited John at Tewksbury, he was wearing diapers with feces in them and hadn’t been shaved for at least a week. Also his glasses and cell phone were missing. They said he appeared at times to be drugged there, and his leg pain was continuing.

Christine believes John regressed regressed mentally and was depressed at Tewsksbury and is continuing to decline mentally and physically at his group home. She said he is now in a wheelchair and is incontinent. Prior to his hospitalization, she said, he was continent and able to walk with a cane.

DPPC should reverse abuse finding

We hope the DPPC reconsiders its finding of abuse against Christine for all of the reasons discussed above. We also hope that DDS reconsiders its restrictions imposed on contact between Christine and her son.  It appears to be very important to John – and witnesses have attested to this – that he be afforded the contact he desires with his mother.

We also think both DDS and DPPC should investigate the care and conditions under which John was kept at Tewksbury State Hospital. A similar investigation should be undertaken at the WCI group home.

Christine and Carmine believe that with adequate assistance from DDS and caregivers, they can care for John at home. “He will receive the love, care, and stimulation he needs that only we can provide if he is allowed to come back home,” Christine said. “Right now, I’m very concerned that he is progressing into a state of despair, which is the last stage of depression.”

We hope DDS seriously considers the option of returning John home to Christine.

Family doctor opposes DDS’s continuing effort to remove mother as co-guardian of her son

November 16, 2021 8 comments

The primary care doctor for the past eight years of a man with an intellectual disability is voicing opposition to a continuing effort by the state to remove the man’s mother as his co-guardian.

For more than a year, the Department of Developmental Services (DDS) has, for unclear reasons, been seeking the removal in probate court of Cindy Alemesis as co-guardian of her son Nick. That is despite the fact that Cindy appears to have saved her son’s life in 2018.

In a letter intended to be submitted to the probate court, Zaheer Ahmed, a doctor of internal medicine based in Lowell, said he has “witnessed how Cindy cares for Nicholas over the years.

“She (Cindy) is very active in his care, concerned for his well-being, makes sure he does not miss medical appointments, and has always acted in the best interest of her son,” Dr. Ahmed wrote in the letter, dated November 9. He added, “I am confident that removing Cindy as co-guardian of her son will not be in the best interest of Nicholas.”

Cindy was the first to notice how ill her son was in December 2018, and got him to a hospital for lifesaving treatment after his group home staff missed a critical medical appointment for him with Dr. Ahmed.

Nick, who is 29, has a mild intellectual disability, and was born with hydrocephalus, a condition in which there is excess spinal fluid in his brain. He has a shunt in his brain that drains the fluid.

Staff in Nick’s group home in Dracut failed to take him for a scheduled morning ultrasound appointment with Dr. Ahmed on December 19 of 2018. The ultrasound would likely have shown that Nick’s brain shunt was leaking spinal fluid into his stomach.

DDS’s only stated reason in its petition for Cindy’s removal, which was filed in October 2020, was that she had made decisions that were not in her son’s best interest. The Department’s petition did not say what those decisions were.

Nick and his mother, Cindy Alemesis

Eight months at Mass. General Hospital

In a previous letter, which Dr. Ahmed wrote following Nick’s hospitalization in 2018, he stated that he had examined Nick on December 17 of that year, two days before Nick fell ill.

During the December 17, 2018, visit, Dr. Ahmed scheduled an ultrasound of Nick’s abdomen for two days later — December 19 at 10 a.m. Dr. Ahmed’s letter added that, “the patient and care worker were both informed of (the) appointment before leaving the office on that date.”  However, Dr. Ahmed said Nick didn’t show up for the December 19 appointment, and the ultrasound had to be rescheduled for December 21.

However, Nick fell ill during a church service in the evening of December 19. During the ride back home in a church van, Cindy insisted that Nick be taken to Lowell General Hospital. There, doctors found that the shunt was leaking spinal fluid into his body. Cindy didn’t know at the time that the ultrasound appointment had been missed.

Nick got sepsis from the leaked fluid, and was transferred to Mass. General Hospital. He remained there for eight months during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Staff missed medical appointments

After Nick’s recovery and release from the hospital in July 2019, Cindy  regularly complained that staff in the group home, run by LifeLinks, a provider to DDS, were continuing to miss medical and dental appointments for him.

In his November 9 letter in the case, Dr. Ahmed stated that “Nicholas has missed doctors appointments. Cindy notices the missed appointments and advocates for her son.”

Cindy filed a complaint in October 2020 with the Disabled Persons Protection Commisson (DPPC), alleging that the group home was continuing to miss medical appoints for her son. But DPPC screened out that complaint as ineligible for an abuse investigation, and instead referred it to DDS for an “administrative review.”

The DPPC intake form stated that Cindy’s complaint was screened out because Nick had not suffered a serious physical or emotional injury. However, that same DPPC intake report acknowledged that one of the alleged missed appointments had led to Nick’s hospitalization for eight months.

Cindy said that during the past year, her contact with her son has remained sharply restricted by DDS and the provider.

DDS guardianship removal petition raises question of retaliation

In 2019, Cindy had sought to remove the other appointed co-guardian for Nick. That co-guardian is paid by DDS, according to DDS records. Cindy maintains that the other co-guardian has been uninvolved in Nick’s care and lives in Florda. Cindy’s effort in court to remove the other co-guardian was unsuccessful.

That previous court battle, however, raises a question whether the current effort by DDS to remove Cindy as co-guardian is being done in retaliation.

A pre-trial conference in the case has been scheduled for December 15 by Probate Court Judge Melanie Gargas.

We are continuing to advocate on behalf of Cindy, and we intend to join with Dr. Ahmed in stating to Judge Gargas that Cindy has always acted in her son’s best interest and should not be removed as his co-guardian.

As we have noted in the past, this case fits a pattern in which DDS and providers have taken a variety of punitive and retaliatory actions against family members and guardians when they are seen as troublesome or meddlesome in advocating for adequate care for their loved ones in the system.

It is unfortunate that DDS has dragged out this case as long as it has. The Department’s effort to remove Cindy as her son’s guardian and the restrictions placed on her contact with her son have placed unimaginable stress on her. Those restrictions have also hampered Cindy’s efforts to advocate for the best possible care for Nick.

We urge DDS to drop its effort to push Cindy out of her son’s life, and to begin to work with Cindy to rectify the problems she has identified with her son’s care in his group home.

 

 

 

Yet again, the family of a DDS client spots a medical emergency missed by staff and clinicians

August 2, 2021 6 comments

Rosemary and Wilfred Dumont were sure there was something seriously wrong with their son Stephen, 37, who lives in a state-operated group home in Spencer.

In their view, he was having trouble breathing.

But the licensed practical nurse in the residence, who is employed by the Department of Developmental Services (DDS), maintained there was nothing the matter with him.

Stephen has an intellectual disability and is deaf. But while he can communicate using sign language, Rosemary said he will not communicate that he is sick because he is afraid of going to the hospital.

On January 18, 2020, Stephen had come home for the weekend not feeling well. As the DDS investigative report on the case stated, Rosemary noticed his apparent breathing problem.

Rosemary Dumont, Stephen (center), and Will Dumont, while Stephen was still at the former Glavin Regional Center in 2011. The Dumonts maintain that the care Stephen has received in the community-based group home system has not been as good as it was at Glavin. Glavin was closed in 2013.

The following Monday, Rosemary texted the nurse, saying, “It looks like he is having a hard time catching his breath. We noticed it last weekend as well…” Rosemary requested that Stephen be given a nebulizer treatment in his group home before going to bed.

According to the DDS report, the nurse responded that Stephen’s lungs sounded clear and that he was not coughing or wheezing. The nurse and another staff member determined a nebulizer wasn’t necessary.

But Rosemary was still concerned. On Thursday of that week, she texted the nurse a video she had taken of Stephen. In her opinion, it showed him struggling to breathe. But the nurse again responded that she didn’t think Stephen was having any breathing difficulty, although she suggested that Rosemary could call Stephen’s doctor, according to the state report.

On Saturday, January 25 — a week after Rosemary first reported Stephen’s breathing problem — Stephen went home for another weekend visit. As far as Rosemary was concerned, he was no better than he had been the Saturday before. The following day — Sunday — Rosemary texted the nurse and a number of other staff at the group home another video of Stephen.

That video shows Stephen seated and looking uncomfortable. In it, he shifts in his seat as if he might be in pain; his mouth is open, and his eyes look glazed.

But the nurse was still not concerned. She responded in a text message that due to background noise in the video — apparently from a TV — she could not hear Stephen’s breathing. But, she added,  “We walked him yesterday morning. No shortness of breath or wheezing.”

Rosemary texted back to the nurse. “Watch the way he is breathing,” she stated. “He is like glopping for air. No wheezing or any sound. Just glopping for air. I’ve never seen it before. Like when he was a baby on a respirator it is worse when he wakes up.”

The nurse responded only that “he has appt tomorrow morning with neuro.”

Rosemary said the nurse all along had the capability of easily measuring Stephen’s blood oxygen level with a pulse oximeter, a device that clips onto a finger. But the nurse apparently did not measure Stephen’s oxygen level until Monday January 27.

Rosemary said that after Stephen was brought back to the group home on that Monday morning, she visited the residence and noticed that he looked ill. This time, she insisted that the nurse measure his blood oxygen level, and the nurse finally did so. The reading was 74, which was dangerously low.

The nurse at that point did call 911, and Stephen was taken by ambulance to a local hospital. “We almost lost him,” Rosemary said. He was diagnosed with aspiration pneumonia and was intubated for five days. He remained in the hospital for two weeks.

But even his first day in the hospital contained a jarring moment of anxiety for Rosemary and Will. A doctor had inexplicably issued a Do Not Resuscitate order for Stephen without their consent. Had Will not discovered the order and objected to it, Stephen would not have been intubated and would likely have died.

And while Stephen did recover fairly quickly from the pneumonia while he was in the hospital, he had to be returned to the hospital as many as three times in subsequent months with intestinal blockages stemming from the pneumonia. His lungs are now compromised, Rosemary said.

DDS finds insufficient evidence of neglect

After an investigation, DDS determined there was insufficient evidence to substantiate any charges of abuse or neglect on the part of the nurse or group home staff. A departmental “action plan” stated only that Stephen’s care giving team should “consider taking measures so that any concerns regarding (Stephen) are effectively communicated and the necessary support/services can be provided…”

Untreated groin infection

Rosemary said that during the same period in which he was struggling with aspiration pneumonia, Stephen developed a groin infection that the nurse also failed to treat. The infection turned into an open wound, she said, that lasted for the next year and a half.

“Now, I don’t let them (he group home staff) do anything on their own involving his (Stephen’s)  medical care,” Rosemary said. “I make all the doctors appointments.” She said she now also consults with a team of doctors for Stephen who are responsive to his condition and listen to her concerns.

Care was better at Glavin

Rosemary and Will maintain that Stephen’s overall care has never been as good as it was when he was a resident of the former Glavin Regional Center in Shrewsbury, a state-run Intermediate Care Center (ICF) that adhered to strict federal staffing and treatment standards. Glavin was one of four ICFs closed by the then Patrick administration between 2012 and 2015.

Rosemary and Will were among the Glavin families with whom COFAR fought unsuccessfully a decade ago to keep the Center open. Like all ICFs, Glavin provided residential, medical, clinical, and all other services needed by the clients on its campus.

Similarity to other cases 

Stephen Dumont’s case is at least the fourth such case we’ve recently written about in which a family member has noticed symptoms of aspiration pneumonia or other serious medical problems involving their loved ones in group homes in the DDS system. In each of those cases, DDS clinical and other staff failed to recognize a problem, thus placing the lives of the clients in jeopardy.

The Disabled Persons Protection Commission (DPPC) and DDS have been inconsistent in determining abuse or neglect in these cases.

Nick’s case

In a case we wrote about late last year, staff in a corporate provider-run group home in Dracut failed to take Nick Alemesis, a resident of the home, for a scheduled morning ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

Just hours after the scheduled time for the appointment, Nick’s mother, Cindy, first noticed how ill Nick appeared. She had him taken to a hospital where doctors found that the shunt was leaking spinal fluid into his body.

Nick got sepsis from the leaked fluid, and was in Mass. General for eight months, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

DDS and DPPC declined to undertake an investigation in that case. DDS has even subsequently moved in probate court for unclear reasons to remove Cindy as co-guardian of her son.

Maria’s case

In a case we blogged about just over a year ago, Michael Person found his daughter, Maria, unresponsive and breathing shallowly in her provider-run group home, surrounded by staff who were unaware of the problem.

Michael, who knew immediately that Maria’s life was in danger, rushed her to his own home where he keeps a tank of oxygen for her. Maria was then transported to Boston Children’s Hospital and placed on life support in the Intensive Care Unit for 14 days. She remained in the hospital for a total of 27 days.

The DPPC investigation in that case also failed to substantiate abuse or neglect.

Yianni’s case

In yet another case, Anna Eves recognized her son, Yianni, was unable to breathe normally after the staff in his provider-run group home had let his condition deteriorate for a week. Anna finally took him herself to the emergency room of a local hospital in Gloucester.  There, his blood oxygen was measured at 50, which is not compatible with long-term survival.

Yianni was admitted directly to the hospital ICU in critical condition and placed on a ventilator on which he would remain for 11 days. He then spent about a week in the Respiratory Care Unit at Mass General Hospital and subsequently spent about three weeks at Spaulding Rehabilitation Hospital. 

In that case, DDS did substantiate several instances of abuse, although none of the substantiations appeared to relate directly to the failure of the group home staff to seek medical care for Yianni in a timely manner.

Please urge support for H.1733

All of these cases demonstrate how important family members are in ensuring adequate care and safety of their loved ones in the DDS system. That is one of the reasons we are advocating for a perennial bill in the state Legislature (H.1733) that would require that probate court judges consider parents of individuals in the DDS system to be suitable guardians for them.

In too many instances, DDS officials, clinicians, providers, and probate judges dismiss families as uninformed or meddlesome. But as Rosemary, Will, Michael, Anna, and Cindy have shown, it is family members who not only have their loved ones’ best interest at heart, they are often the ones most clued in to their physical and emotional conditions.

Increasingly, as ICFs have been closed in the state and more and more services have been privatized, families have become the last line of defense in the care of their loved ones.

Please call the Legislature’s Judiciary Committee and urge the Committee to finally approve H.1773. You can reach the office of Senator James Eldridge, Senate chair of the Committee, at (617) 722-1120; and Representative Michael Day, House chair, at (617) 722-2396.

Tell the Committee staff that this bill is needed to ensure that families have the basic right to a say in the care of their loved ones in the DDS system.

A mother’s lonely battle for appropriate care for her son

June 29, 2021 9 comments

Valerie Loveland has felt as though she has had to fight alone to protect her son from indifferent care and even abuse in the Department of Developmental Services (DDS) system.

Her decisions were questioned, she says, not only by the staff in her son’s previous group home in Cotuit, but by DDS officials and even the DDS-paid co-guardian for him. 

At times she has feared that her own co-guardianship of her son might be taken away. (Although she wants her son’s story told here, she requested that his name not be used.)

In addition to other issues she has had to deal with, the state’s response to alleged sexual abuse of her son in March of this year in the group home seems to have been shrouded in secrecy.

Valerie Loveland

Even as co-guardian, she has not been allowed to view the complaint filed in the matter. She has been told only that her son was allegedly sexually abused by a group home staff member, but not what happened.

Tide may have turned

The good news is that in the past few weeks, the tide seems to have turned in her son’s favor.

Although Valerie was not able to get her son into a state-operated group home, as she had hoped, the May Institute did place him earlier this month in a new residence, also in Cotuit. And she said the new group home staff is making an effort to follow her requests to improve her son’s diet, which she said is linked both to his health and his behavior. The staff are also carrying out his occupational therapy plan.

For Valerie, it has all been about introducing common sense to her son’s care. “Maybe we should change what he’s getting to eat,” she said, citing an example. “That might actually save the state money on doctors visits, damage to the residence etc. That’s why I’ve been in their face.” 

But as is so often the case, common sense does not prevail in the DDS system. Valerie’s case demonstrates how family members in the system frequently find themselves pitted against providers, clinicians, probate court judges, and bureaucrats. The family members’ concerns and wishes for their loved ones are too often disregarded or overridden.

Valerie’s son, who is 23, has an intellectual disability, is non-verbal, and needs 24-hour care. He has now been a resident for the past five years in three separate group homes on Cape Cod run by the May Institute.

Valerie said DDS had attempted to remove her as her son’s guardian when he turned 18, but then agreed to the co-guardianship arrangement.  The other co-guardian is an attorney who is paid by DDS and who has other wards as well. 

She said there had been problems in the previous Cotuit-based group home with cleanliness and thefts of her son’s electronic devices that help him communicate. In March, her son was allegedly sexually abused by a staff member of the group home. The incident was apparently reported to the Disabled Persons Protection Commission (DPPC) by another staff member.

Valerie has been told that DPPC is still investigating as are police. Her request to DPPC for a copy of the written complaint in the case was denied because the investigation is still underway. 

Son’s care has taken a financial toll

After the alleged assault, Valerie removed her son from that group home and cared for him at home. He was placed in the new May Institute group home in Cotuit on June 19.

Valerie, who lives in Chatham, estimates that it has cost her thousands of dollars in lost income to care for her son at home and drive him each day to his day program in Mashpee.

Valerie works in grocery delivery and part-time in aromatherapy, and is working for a college degree in alternative medicine. She said the DDS-paid co-guardian has largely been uninvolved in her son’s physical care, but criticized her decision to remove her son from the group home in which he was allegedly abused.

She and her ex-husband were divorced in 2002. She said her ex-husband has been completely uninvolved in her son’s life and hasn’t seen him since her son was about 2 or 3 years old. Valerie cared for her son at home until he was 18.  Her ex-husband owes her child support, she said, but has disappeared. Even private investigators, including one hired by the state Department of Revenue, haven’t been able to find him.

May Institute executives well compensated

Despite her tenuous financial situation, Valerie has had to deal with a system dominated by well-paid corporate executives and powerful state officials. The May Institute’s Fiscal Year 2019 tax filing with the IRS listed a dozen executives of the nonprofit organization as having received more than $100,000 each in salary and other compensation that year.

That list was topped by May Institute President and CEO Lauren Solotar, who received almost $477,000 in total compensation, followed by the COO, who received close to $331,000. Five other executives made more than $200,000 each.

COFAR President Thomas J. Frain maintained that with compensation levels that high, the May Institute’s executives should be held accountable for ensuring that all of its clients receive adequate and appropriate care.

Instead, Valerie said it is only now that she feels the organization understands and is responding to  her son’s needs.

Saw diet as cause of problems

Valerie said that while her son was at the first May Institute group home in Cotuit, his aggressive behaviors started to escalate, including banging his head against walls and tearing up his mattresses. She said the group home tried to bill her for the expenses; but, as his Social Security representative payee, she argued that the staff needed to try to understand his behavior.

Valerie maintained that dietary changes that she insisted upon reduced the head-banging. Those dietary suggestions included giving him whole foods, including fresh vegetables, fruits, and whole-grains and essential oils supplements.

Until recently, there was resistance to her efforts, even from the other co-guardian. As late as May 31, the other co-guardian stated to her in an email: “Instituting a diet change for anyone is a major step. Especially if the reason is not medically required.”

Prior to her son’s placement in his new group home, the May Institute residential director for Cape Cod wrote to Valerie on June 2, saying the provider would not be able to meet her dietary requirements for her son.

That has lately changed, Valerie said. The new group home staff appear to be making an effort to follow those requirements.

Pushback on other efforts to protect son

Valerie said that over the past year, she encountered pushback from the provider, the co-guardian, and DDS to other efforts she was making to protect her son. Those included her initial efforts to remove her son from the first group home, even after the abuse allegation surfaced.

Valerie said she asked DDS several times after learning of the March abuse allegation about moving her son to another group home; but the area office said nothing was available due to the COVID crisis.  As a result, she said, she took her son home with her.

In a May 25 email, the DDS-paid co-guardian stated, “I trust the May Institute and its staff to be working for the best for (her son). I am not in favor of looking for another residential placement… I am unaware of any other residential program that would accept (her son) or be in his best interests.”

As late as June 2, the co-guardian said he continued to “fully object to his (her son’s) removal from May until a response from DDS is obtained.”

Valerie claimed that as recently as a month ago, the co-guardian threatened in group meetings with DDS and the provider to have her removed as co-guardian. “He said he would take me to court to have me removed,” she said. She added that during those meetings, “no one from DDS or May said a word” in response.

Valerie said the co-guardian finally relented regarding removing her son from the first group home, and earlier this month approved his move to the new residence.

Denied use of bathroom

When the May Institute finally suggested the new group home for her son, Valerie took on the task of easing the transition for him to the new residence. She drove him to the new residence on May 26 to help him get acquainted with it and with the residents and staff.

But she herself wasn’t allowed inside, even to use the bathroom after the hour-long drive from her home in Chatham.

The reason given for denying her entry to the residence was the COVID crisis. But both she and her son were vaccinated, and her son was allowed inside even without a mask.

 “I didn’t understand why I couldn’t run in and use the bathroom,” she said. “I wasn’t asking to stay inside. I was asking for toilet facilities. It seemed unreasonable to me.”

When Valerie later wrote to May Institute officials to complain, the May institute residential director responded that, “At this time, indoor visitation is not approved under state guidelines.” But that was not the case according to the DDS guidance, dated March 19, which was then in effect.

The DDS visitation guidance gave the providers discretion regarding indoor visits, stating that any restrictions should not be arbitrary. COFAR reported in May that many DDS group home providers were continuing to impose highly restrictive visitation requirements on family members even if all of the residents had been vaccinated.  

Since her son moved into the new group home, Valerie said the residential staff has allowed her inside.

Valerie said she is hopeful that a new era of common sense-based care has begun for her son in his new group home. But she said she is mindful of the difficulties she has faced and the long road she has traveled to get him to this point.

She also recognizes that although the situation today for her son appears better than it was a few months or even weeks ago, that could change.

“I think it’s important for people to understand this type of situation isn’t a ‘one and done’ for a complex kid like my son,” she wrote to us. “His being nonverbal has been a big challenge for him and staff. I’ve been the bridge. I won’t always be here. I keep trying to figure that part out…”

DDS seeks to remove mother as co-guardian of her son after she saves his life

November 12, 2020 51 comments

Cindy Alemesis’ son, Nicholas, nearly died in December 2018 after staff in his group home in Dracut failed to take him for a scheduled morning ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

Just hours after the scheduled time for the appointment, Cindy first noticed how ill Nick appeared.

Cindy was with Nick following an evening church service, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that the fluid had begun to build up in his stomach. Cindy didn’t know at the time that the ultrasound appointment had been missed.

Nick got sepsis from the leaked fluid, and was in Mass. General Hospital for eight months, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Nick, who is 28, has a mild intellectual disability, and was born with hydrocephalus, a condition in which there is excess spinal fluid in his brain. He has a shunt in his brain that drains the fluid.

Nick Alemesis and his mother, Cindy

Since Nick’s recovery and release from the hospital in July 2019, Cindy has regularly complained that staff in the group home, run by LifeLinks, a provider to the Department of Developmental Services (DDS), have continued to miss medical and dental appointments for him.

But rather than addressing those concerns, DDS is now moving to remove Cindy as her son’s co-guardian, stating only in a court document filed last month that she has made decisions that were not in Nick’s best interest. The DDS filing in Middlesex Probate Court does not provide any specifics as to what decisions those might have been.

Cindy said DDS has done little or nothing to address the concerns she has raised about Nick’s care in the group home.  She said problems, in addition to the missed appointments, include sharp restrictions placed on her contact with Nick for reasons that have not been explained to her.

Cindy said the other co-guardian for Nick, who is apparently paid by DDS, appears to live in Florida, and has been uninvolved in Nick’s care. Cindy sought unsuccessfully to remove that co-guardian last year in probate court.

It isn’t clear whether the current move by DDS to remove Cindy as co-guardian is in retaliation for her attempt to remove the other co-guardian. It is also unclear whether DDS wants to make that individual Nick’s sole guardian.

I emailed a request for comment on this matter on Tuesday (November 10) to DDS Commissioner Jane Ryder, and to Barbara Green Whitbeck, DDS assistant general counsel. Whitbeck signed the Department’s petition to the probate court to remove Cindy as co-guardian. Neither Ryder nor Whitbeck has yet responded to my request for comment.

Support from church pastor 

Keith Phemister is pastor of the Lighthouse Baptist Church in Hudson, NH, which Cindy, her husband, and Nick have attended for the past 20 years.

Phemister strongly supports Cindy’s remaining as Nick’s co-guardian, and said he is baffled by DDS’s claim that she hasn’t made decisions in his best interest.

Phemister said Cindy can be abrasive at times, and that he has spoken to her about it. But he maintains her abrasiveness is because she feels that her son is being mistreated, and that she sometimes will speak her mind without thinking about how others might react.

“I know she (Cindy) is fighting for her son,” Phemister said. “It’s possible they (DDS) see that as a negative, but she loves her son and is fighting for him, and they’re holding that against her.”

Phemister said that on the evening Nick got ill in December 2018, Nick had attended Wednesday church services with Cindy. The church has a van that picked Cindy up from her home in Lowell, and picked up Nick from his group home in Dracut, and took them to the church in Hudson, NH. After the service, Nick started feeling ill, and was sweating and vomiting on the van ride back to Dracut.

Phemister said Cindy was so concerned, she had them detour and take Nick to Lowell General Hospital. Nick was later transferred to Mass. General. Phemister said the medical staff apparently told Cindy that Nick would have died had he not been brought to the hospital that day.

Cindy at Nick’s bedside in the hospital

Doctor stipulates to missed ultrasound appointment

In a written statement, Zaheer Ahmed, a doctor of internal medicine based in Lowell, said he examined Nick on December 17, 2018, two days before Nick fell ill and was taken to Lowell General.

During the December 17 visit, Ahmed scheduled an ultrasound of Nick’s abdomen for two days later — December 19 at 10 a.m.

Ahmed’s statement added that “the patient and care worker were both informed of (the) appointment before leaving the office on that date.”  However, the doctor’s statement says Nick didn’t show up for the December 19 appointment, and the ultrasound had to be rescheduled for December 21.

However, by then it was too late. Nick fell ill during the church service in the evening of December 19. During the ride back in the van, Nick was first taken on Cindy’s insistence to Lowell General Hospital. He was transferred a few hours later to Mass. General.

A document from Mass. General shows Nick was admitted on December 20 with fever, nausea, vomiting, lethargy, and abdominal pain. That was the start of an eight-month stay in the hospital.

At Mass. General, Nick had 13 operations to remove and replace the shunt in his brain, and seven procedures on his throat due to an infection caused by his trach tube, Cindy said.

According to the Mass. General document, Nick also underwent a subsequent operation for a perforated bowel caused by a piece of the infected shunt.

DDS and provider apparently failed to report hospitalization

Given Dr. Ahmed’s written statement regarding the missed ultrasound appointment, the LifeLinks staff were knowledgeable and responsible for bringing Nick to the appointment, and failed to do so – a potentially negligent act that could well have cost him his life.

Cindy said she immediately reported those circumstances to officials at DDS. It appears, however, that neither the provider nor DDS reported the matter to the Disabled Persons Protection Commission (DPPC), as required by the DPPC’s enabling statute and regulations. As a result, DPPC never investigated the matter or authorized DDS to investigate it.

In response to a query from Cindy earlier this month, DPPC responded that it had received no complaint report involving Nick’s hospitalization until Cindy herself filed a complaint about it last month.

The DPPC’s statute and regulations state that “mandated reporters” must report any situation resulting in a serious physical injury if there is reasonable cause to believe it was due to abuse or neglect.

Missed appointments continue

Cindy said she has been frustrated that the group home staff continued to miss appointments for Nick, even after his release from the hospital in July 2019.

A written statement from Jonathan Moray, a doctor with New England Neurological Associates of Lawrence, stated, for instance, that Nick missed an appointment on November 27, 2019, just a few months after he got out of the hospital.

A written statement last year from Tufts Dental School states that they could not schedule any further dental appointments for Nick “due to lack of updated medical paperwork.” That paperwork is required to be updated yearly, and nothing was on file since 2017, the Tufts letter stated.

Cindy said Nick’s teeth are still damaged from a trach tube that was inserted during his hospitalization.

DPPC screens out recent complaint

Unable to get an adequate resolution to her concerns about the missed appointments, Cindy filed the complaint last month with DPPC. But the agency screened out that complaint as ineligible for an abuse investigation, and instead referred it to DDS for an “administrative review.”

The DPPC intake form states that Cindy’s complaint was screened out because Nick had not suffered a serious physical or emotional injury. However, that same DPPC intake report acknowledged that one of the alleged missed appointments had led to Nick’s hospitalization for eight months.

DDS attorney threatened to take away co-guardianship in 2019

Cindy said Barbara Green Whitbeck, the DDS assistant general counsel, first threatened to take away her co-guardianship of Nick last year, and accused Cindy at the time of trying to improperly feed Nick while he was hospitalized. Cindy denied that she ever fed Nick improperly.

Whitbeck has represented DDS in the ongoing probate court fight in which Cindy had sought to remove the DDS co-guardian. Cindy said that when she informed Whitbeck during a private meeting of her concerns about the other co-guardian and the alleged negligence of the provider, Whitbeck dismissed those concerns.

“She (Whitbeck) said the (LifeLinks) staff did nothing wrong,” Cindy said. “Then she accused me of feeding my son and keeping him sick in (Mass. General).” Cindy said she got up at that point to leave the meeting, and Whitbeck threatened her, saying if she left, she would lose her co-guardianship.

Cindy said the charge of improperly feeding Nick was untrue and “came out of left field.”

Cindy said that while she was at Nick’s bedside in the hospital, the nurses trained her in how to suction his trach tube and how to put his medication, which was crushed up in a type of pudding, into his G-tube. His trach had to be sanctioned every 20 minutes or so, she said.

Cindy feels Nick is continuing to be isolated in his group home

Cindy said Nick’s phone was recently taken away from him, and that he has had few social interactions since March. Before that, his church was his main source of social interaction.

Currently, Cindy’s contact with her son is restricted by the group home to once a week. Her phone contact with him is also apparently highly restricted. She was told in March that no in-house visits were permitted because of the COVID crisis, but said no one informed her that in-house visits were restored as of early October under revised DDS guidelines.

In an email on Oct. 8, Cindy complained to Nick’s service coordinator that the group home staff told her not to call Nick, and didn’t give her a reason for that. She said she sometimes goes for three to five days without hearing from him.

Cindy said those restrictions on contact have made it harder for her to keep track of the care Nick is receiving, and to monitor his medical needs. She said that when she called the house earlier this week to ask permission to visit her son, a staff member hung up on her.

Case fits a pattern

Unfortunately, this case fits a pattern we have seen in which DDS and sometimes providers themselves have taken a variety of punitive and retaliatory actions against family members and guardians when they are seen as troublesome or meddlesome in advocating for adequate care for their loved ones in the system.

Guardians, parents, and other family members can suddenly find their contact with their loved ones restricted or banned entirely, and their guardianship placed in jeopardy. They are frequently either ignored or threatened with punitive actions if they don’t agree to accept the providers’ decisions on care and services without complaint. (Examples of this are here, here, here, here, here, here, here, here, here, and here.)

Without an attorney, family members and guardians can find themselves badly outmatched and outgunned by DDS’s extensive legal resources, particularly in probate court. The system is entirely unfair and designed to bully families into submission.

It shouldn’t have to be this way. We strongly hope that Cindy prevails in her battle to keep her guardianship, and will do everything we can to help her. But it will likely be an uphill battle.

What you can do

We urge people to call DDS at 617-727-5608 and ask to leave a message with the commissioner in support of Cindy remaining as her son’s co-guardian.

Also, please call your local state legislators (you can find them here), particularly if you live in the Lowell and Dracut areas, and ask them to contact DDS on her behalf. And please share this post on Facebook and other social media.

Questions surround supervision of DDS client with violent history

October 26, 2020 7 comments

Anthony Remillard, an intellectually disabled man who fatally assaulted another man at the former Templeton Developmental Center in 2013, has been released from prison to a group home amid lingering questions about his supervision.

Dennis Perry, who was also intellectually disabled, died in the sudden and unprovoked attack in which Remillard shoved him against the side of a boiler in the dairy barn of the former facility.

Nancy Perry Mias, Dennis Perry’s sister, told us in September that she had been notified that Remillard, who was convicted of the crime and served seven years in prison, has been placed in a group home funded by the Department of Developmental Services (DDS).

Nancy said her concern is for the residents at the group home, as Remillard obviously has violent tendencies and probably didn’t get the help he needs while in prison. “I do have sympathy for this man,” she wrote to us in an email, “but I just feel as if the other families at the group home could be blindsided as we were, when we found out his history.”

In response to a Public Records Law request we sent to DDS in September, the Department responded that it does not have specific policies to alert the police, families, the community, or other residents when people with violent or criminal tendencies are placed in group homes.

DDS does provide special staff training, known as Crisis Prevention, Response and Restraint (CPRR), in group homes that house persons with potentially violent behaviors, an official stated. But it is not clear whether the group home to which Remillard has been admitted has implemented the CPRR curriculum, as specified in DDS regulations.

We’ve blogged about this case a number of times, also questioning the lack of supervision of Remillard at Templeton. We’ve also questioned whether it was appropriate to place him in prison where he wasn’t likely to get treatment, but would possibly be exposed to even more violence.

While Templeton was a functioning Intermediate Care Facility (ICF), it housed a number of clients with violent behaviors. But Remillard was a resident there after the facility was targeted for closure and was being phased down. Templeton was closed in 2015.

Although an internal DDS investigation of Perry’s murder cleared the Templeton staff of any omissions of care, we raised questions about the lack of thoroughness of the DDS report and the fact that the Department was essentially investigating itself in the matter.

In September, after learning of Remillard’s release from prison, we filed the public records request to determine what policies DDS has to protect other residents and the community when potentially violent residents are placed in DDS facilities. We asked, among other things, for any policies to alert the police and other residents and guardians and members of the community to the criminal backgrounds of clients in group homes.

DDS stated that it doesn’t have any policies of its own on alerting family members or the police in those cases. The DDS response stated only that the Department “supports” clients in following laws requiring them to register as sex offenders or to report to law enforcement or probation.

The only thing DDS stated that it has specifically done to ensure the safety of clients in these cases is to have developed the CPRR training program for staff of facilities with residents who have violent behaviors. As part of the their response to us, DDS included an “approved CPRR” workbook, dated 2017 and titled, “Proactive Approaches to Behavioral Challenges.”

The focus of the workbook is on “de-escalation and prevention of challenging behaviors.” The document describes a 20-hour training curriculum, and states that staff in group homes with potentially violent residents receive 1-year certifications in the use of “least restrictive techniques” and in the use of restraints as a last resort.

The workbook discusses the importance of providing reassurance and support to residents who exhibit “challenging behavior.” It states that many people who become violent do so out of feelings of powerlessness and vulnerability. The workbook suggests that “helping this person feel stronger and safer is a major means of reducing the probability of aggression.”

The workbook also states that most people exhibit “cues” or warning signs of aggression, and that “knowledge of these and their typical order of occurrence is a key to having a positive outcome to the situation.”

The workbook then lists several handholds and other techniques as “a last resort” to control physically aggressive individuals who endanger themselves, staff, or others. The techniques are presented in a sequence of least restrictive actions to most restrictive.

We assume, or hope, that Remillard has been sent to a group home that provides that training. We have no way, however, of evaluating the quality of the training described.

Ultimately, a single training curriculum is probably not sufficient to ensure the proper supervision of potentially violent individuals in the DDS system, and to keep other residents and the community safe.

This case is yet another reason to question the state’s longstanding policy of closing highly supervised ICF-level facilities such as Templeton, and then privatizing those functions.

But those types of questions have not been raised in recent years by the Legislature or successive administrations about either this case or any number of other abuse and neglect cases that afflict the DDS system with tragic regularity. The Legislature’s Children, Families, and Persons with Disabilities Committee has blown opportunity after opportunity to examine these systemic problems.

The Committee is a symbol of legislative failure in this regard, but it is hardly alone in that. The state Attorney General’s Office has similarly failed to take action to protect persons with developmental disabilities.

Nancy Perry Mias and other members of her family initially sought help from members of the state’s congressional delegation in obtaining an independent investigation of the DDS system in the immediate aftermath of Dennis Perry’s killing. They met with the staff of U.S. Senator Elizabeth Warren and with Representative Jim McGovern himself.

They all promised to look into the matter, Nancy said, “but we never heard a word back from them.” She said McGovern even said at the time that, “You certainly deserve an apology.” But, she said, the family never got one.

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

September 27, 2020 6 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.

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