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 2 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.

Large increase in COVID among residents in DDS provider-run group homes, but not in state-operated homes

January 11, 2022 4 comments

The latest state report on COVID testing in facilities funded by the Department of Developmental Services (DDS) shows what appears to be a major increase in residents testing positive for the virus in corporate provider-run group homes.

However, there appears to have been little or no increase in COVID among residents of the smaller network of DDS state-run group homes.

According to the state data, the number of residents testing positive in DDS provider-run group homes jumped from 34 to 146 in the period from November 30 to December 28.

In the DDS state-operated group home system, the number of residents testing positive rose only from 9 to 10 in that time frame. We think this difference may reflect the fact that staff in state-run facilities are required to be vaccinated, whereas there is no similar vaccination requirement for staff in provider-run residences.

Staff testing positive in state-run group homes did rise from 20 to 66, according to the latest report. But there is no information available on the number of staff that have tested positive in provider-run group homes. For some reason, that number is not reported.

At the DDS-run Wrentham Developmental Center, the number of residents testing positive rose from zero to five or less. (Numbers under 5 are not specified.)

Staff testing positive at the Wrentham Center rose from three to 24. But that hike in positive staff does not appear to have been mirrored by a large increase in residents testing positive there. Also, as one family member of a Wrentham Center resident said, most of the staff testing positive there are either asymptomatic or have mild symptoms, apparently due to the required vaccinations.

At the Hogan Regional Center, zero residents have tested positive since January of last year. Five staff tested positive at Hogan as of December 28. Prior to that date, no staff had tested positive there since last April.

Despite the increases in residents testing positive in DDS provider homes, deaths among residents have not risen in either the provider-run or state-run networks. In the month prior to December 28, less than five residents died in the state-run and provider-run group homes. (Numbers of deaths are not reported separately for each network.)

There were zero deaths of residents at Hogan or Wrentham in the month prior to December 28. Data on deaths among staff in DDS facilities, whether state-run or provider-run, are not reported. Also, testing results are only now reported monthly, which makes analyses of trends difficult.

Vaccinations of all staff urged

Rick Glassman, director of advocacy for the Disability Law Center, was quoted by WBUR last week as saying that regardless of staffing shortages facing some DDS group homes, vaccines should be mandated for all group home workers, and there should be more frequent testing of both residents and workers.

“It is to the state’s credit that they require vaccines in nursing homes,” Glassman said, according to WBUR. “But people with intellectual and developmental disabilities are equally, and sometimes more, vulnerable.”

Inconsistencies in vaccination policies

We have similarly called for a requirement that staff in provider-run residences be vaccinated. The difference in vaccination requirements for state and provider staff has resulted in major inconsistencies in the state’s response to the virus.

For instance, Nicole Coughlin, a DDS service coordinator, was suspended without pay on December 27, according to a Mass Live report, and threatened with termination because she had not received a second Moderna shot by the October 17 vaccination deadline set by Governor Baker for state employeees. Coughlin’s first vaccine shot last February prompted a severe allergic reaction that accelerated her heart rate and made it difficult to breathe.

According to the report by Mass Live, the Baker administration denied Coughlin a medical exemption even though three medical specialists, including her doctor, recommended that she not receive a second Moderna shot. One specialist said a second shot could be fatal to her.

It makes no sense that some DDS employees are facing a vaccination requirement that apparently allows for virtually no exceptions, while a much larger group of employees in the same field face no requirement at all.

It has been fortunate that the uptick in residents testing positive in the DDS system has so far not resulted in more deaths among those residents. But there is much to be concerned about regarding the increase in COVID cases, and little information on which to evaluate those concerns.

Even though the death rate hasn’t gone up, has the rise in residents testing positive in the provider-run group homes resulted in a higher hospitalization rate or in potentially long-term health complications among those residents? Since no data are reported on hospitalizations or health impacts, we don’t know the answer to those questions.

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.

DDS corporate providers and their allies once again attack the former Fernald Center with a selective account of its history

December 21, 2021 4 comments

Yet again, the former Fernald Developmental Center in Waltham is being targeted politically by corporate human services providers that are selectively focusing on the Center’s dark history prior to the 1980s.

Fernald may have been closed for the past seven years, but it is still proving to be as potent a target as ever for proponents of the privatization of care in the Department of Developmental Services (DDS) system.

As was the case last year, the Arc of Massachusetts and other provider-based groups have signed a petition and letter to Waltham Mayor Jeanette McCarthy, protesting an annual holiday light show currently underway on the Fernald campus.

This year, the providers have been joined by the Mental Health Legal Advisors Committee (MHLAC), a legal advocacy entity located within the state Supreme Judicial Court.

Philip Kassel (no relation to this blog post writer), executive director of the MHLAC, wrote a letter on December 10 to a legislative commission on the status of persons with disabilities in which Kassel joined in the criticism of the light show as “disturbing and inappropriate.” Kassel described Fernald as as a place of “horrors” and “virulent dehumanization.”

Kassel’s letter further stated:

…residents with disabilities (at Fernald) were subjected to “scientific” experiments and other forms of physical and psychological abuse. Walter Fernald himself was a proponent of eugenics and forced sterilizations, which occurred at the institution. Students were fed radioactive oatmeal by esteemed Harvard and MIT professors in what they called research. And innocents were imprisoned in squalid conditions for much of their unhappy lives.

These things either occurred or were true of Fernald prior to the 1980s. But, as I stated in an emailed response to Kassel on December 16, significant changes were brought about at Fernald and in other institutions for persons with developmental disabilities from the 1980s onward. Those changes occurred as a result of class action litigation in the 1970s, which was overseen by the late U.S. District Court Judge Joseph L. Tauro.

Judge Tauro enabled the creation of a new model of care in both the institutions and the community system in Massachusetts that required the investment of hundreds of millions of dollars.  After years of improvements, Tauro concluded in 1993 that this state now had “a system of care and habilitation that is probably second to none anywhere in the world.”

There is no mention in Kassel’s letter of Judge Tauro or of the changes he oversaw at Fernald and at other institutions for persons with developmental disabilities. There is similarly no mention of Tauro or those changes in the petition or letter to Mayor McCarthy.

I also noted in my message to Kassel that the experiments at Fernald on children that he referred to took place between 1946 and 1953. It is, of course, necessary to know and understand that awful period in the history of institutional care of the developmentally disabled in this country.

But, as I stated to Kassel, “focusing public attention solely on the history of Fernald from the 1940s through the 1960s, and even before that, overlooks the full history of Fernald.”

That selective focus, I noted, also overlooks the human price paid for deinstitutionalization from the 1980s onward of both persons with developmental disabilities and mental illness. That is because such a selective focus diverts discussion and inquiry from events that happened subsequent to the 1980s and from current matters affecting people with disabilities.

That is an erasure of history, I said in my message, and its effect has been the facilitation of the ongoing and unchecked privatization of care in the DDS system, in particular.

In a response to my message, Kassel said he disagreed that the reforms at Fernald from the 1908s onward should necessarily be considered in discussing “the sordid history” of the institution.

Kassel said he also disagrees with our assessment of the history of deinstitutionalization. “If there are failures (with  deinstitutionalization),” he stated, “they may be attributed to inadequate efforts to replace places like Fernald with community-based alternatives.”

In a response to Kassel’s response, I said we agree that the efforts to replace Fernald and other institutions with community-based alternatives have been inadequate. I noted that in testimony in 2018 to a legislative committee, Nancy Alterio, executive director of the Massachusetts Disabled Persons Protection Commission (DPPC), stated that abuse and neglect of persons in the DDS system had increased 30 percent in the previous five years, and had reached epidemic proportions.

Alterio’s testimony came long after the state had begun to rely primarily on privatized, community-based group homes for residential care of persons with developmental disabilities, and long after the state had phased out and closed all but two state-run developmental centers comparable to Fernald.

So, in our view, I said, deinstitutionalization of people with developmental disabilities has been far from a success. And that failure hasn’t been due to a lack of funding. DDS’s corporate provider-run group home line item in the state budget (5920-2000) is now well over $1.3 billion — an amount that is 90 percent higher than what it was a decade earlier.

I added in my second response to Kassel that rather than investing that increased funding over the years in adequate wages and training of direct-care workers in the community-based system, the providers have enriched their own executives. In a survey we conducted in 2015, we found that more than 600 executives of providers in the DDS system in the state were receiving some $100 million a year in salaries and other compensation.

In fact, decades after closures have occurred of a significant portion of the institutional system for people with developmental disabilities around the country, it is now in community-based group home settings that abuse, neglect, and warehouse-like conditions appear to have become a problem of epidemic proportions. (See these multi-part exposes starting in 2011 by The New York Times, in 2013 by The Hartford Courant, and in 2016 by The Chicago Tribune.)

Our concerns remain over proposed commission on history of Fernald and other state facilities

Meanwhile, as the debate continues over the Fernald light show, legislation is pending in the Legislature that would establish a state commission (S.1257and H. 2090) to study the history of Fernald and other similar institutions. We are seeking changes in the language of the bill to ensure that the commission tells the accurate and complete story of those places.

I said to Kassel that we assume that the Mental Health Legal Advisors Committee supports this legislation, and we would hope the organization similarly desires that the story of Fernald be told accurately and completely.

In our view, the effort to revoke the permit for the light show at Fernald simply serves the purpose of those who have a vested interest in overlooking Fernald’s complete history.

DDS denial of our request for records could indicate plans exist to close state-operated group homes

December 17, 2021 5 comments

In a move that may indicate plans are in the works to consolidate or close state-operated group homes in Massachusetts, the Department of Developmental Services (DDS) has denied our request for internal records concerning such plans.

In a December 13 response to our request for the records, DDS said the documents are exempt from disclosure under the state’s Public Records Law because the records relate to an “ongoing or evolving policy matter.”

At issue are eight internal emails that DDS said are responsive to our records request.

We think the fact that DDS cited that Public Records Law exemption for evolving policy matters could be an indication that the Department is developing a new policy regarding the future of its state-operated group home network. We are concerned such a policy might not be good news for those facilities; however, any documentation that might shed light on that is now being withheld.

We first asked DDS on October 15 for any and all internal records, generated since September, that concern closures or consolidations of DDS state-operated group homes due to unvaccinated staff for COVID or for other reasons.

In mid-October, we received a report from a COFAR member that up to seven state-run homes in the southeastern region of the state had been closed because staff in them had not been vaccinated. Later that month, we heard that a state-run group home in western Massachusetts was being closed and that at least one of the residents there was moved without written notice to a location in another town.

In August, Governor Baker issued an executive order requiring all state employees to be vaccinated by October 17 or ultimately be terminated.

In October, we reported that we were growing increasingly concerned that the critically important state-run DDS group home network could be facing a crisis that could threaten its long-term existence.

We often advise families whose loved ones are experiencing poor care in provider-run residences to ask for placements in available state-run group homes. Staff in the state-run network generally receive higher pay and benefits and more training than their counterparts in the provider system.

DDS initially was going to charge $1,000 fee for the records

In an initial response to our public records request on October 29, DDS stated that there were potentially 1,600 responsive emails, and that producing the documents would require us to pay a $1,000 fee.

In a Nov. 9 phone call, I talked with Brian Fleming, the DDS associate general counsel and records access officer, about narrowing our request.

In his December 13 written response to us, Fleming said the narrowed search had turned up a total of 190 emails, and that eight of those were determined to be responsive to our request. However, he said that all eight of those emails were being withheld because they relate to the Public Records exemption for “interagency or intra-agency memoranda or letters relating to policy positions being developed by the agency.”

Fleming said the Governor’s Executive Order requiring all executive branch employees to be vaccinated “is an ongoing and evolving policy matter which is subject to the deliberative exemption.”

Fleming said that in addition, an unspecified number of emails were being withheld on the basis of attorney-client privilege. He provided a log of 10 emails that he said were subject to that latter exemption.

Appeal unlikely to be successful

Unfortunately, it has been our experience that if DDS cites the evolving policy exemption or the attorney-client exemption, we would probably lose any appeal for the records that we might file with the state Supervisor of Public Records. We believe the Supervisor would claim an inability to determine whether an internal departmental policy is settled or evolving. Similarly, it is unlikely that the Supervisor would dispute a departmental claim of attorney-client privilege.

A pattern of withholding information

With this latest denial of our Public Records Request, we once agan find ourselves in the position of having to speculate as to what DDS’s plans are regarding the immediate and long-term future of care in the system.

In this case, we had initially emailed DDS Commissioner Jane Ryder and the press office at the Executive Office of Health and Human Services (EOHHS) on October 14 with questions about the reports of closures and consolidations in the state-operated group home network.

To date, Ryder has not responded to our query. A spokesperson for EOHHS said in a response to our email that we would have to file a Public Records Request for that information.

On October 15, we filed that Public Records Request with both DDS and EOHHS. EOHHS responded that same day that that agency did not have any records relevant to our query. And on December 13, DDS responded, as noted, that the records it has are exempt from disclosure.

As we’ve said many times, we think the secrecy practiced by the administration over DDS matters, in particular, is unnecessary and does not foster trust in government by the public. The administration has the discretion to be transparent about its plans and policies. It should consider doing so.

Governor signs bill to distribute federal money for direct-care worker pay, but there is still no distribution timeline set

December 14, 2021 Leave a comment

Gov. Charlie Baker on Monday signed legislation that would target hundreds of millions of dollars for human services workforce retention and recruitment as part of a $4 billion federal and state spending package.

According to the State House News Service, the governor signed the bill (H. 4269), which earmarks both federal American Rescue Plan Act (ARPA) money and surplus state revenues for immediate needs. The bill also preserves some $2.3 billion in federal ARPA funds for future use.

There is still, however, apparently no clear timeline for distributing the funding to boost wages of direct-care and other staff in the Department of Developmental Services (DDS) system.

As of November 29, Shannon Guenette, executive director of Almadan, Inc., a DDS provider, told COFAR she still hadn’t seen any of the federal stimulus money even though Congress and the Biden administration had released $8.7 billion in federal stimulus funds to Massachusetts last March.

Guenette first told us in August that her agency and other DDS providers throughout the state desperately needed the additional federal funding to retain workers in light of a worsening shortage of direct-care and clinical staff.

The state Legislature finally voted on December 3 to enact the $4 billion bill and send it to Baker’s desk. The vote came after the House and Senate had failed to reach agreement on the legislation before starting their legislative winter break.

Baker echoes our concern about advisory panel

In signing the legislation, Baker vetoed a section of the bill that would require that an advisory panel be formed and consulted before premium pay could be awarded to frontline employees.

Accordng to the State House News Service, Baker said he was concerned the advisory panel would create “red tape” that could delay distribution of the funding. “We would rather just put a premium pay program together and get the dollars out the door to people,” Baker reportedly said.

We previously raised this same point, noting that the advisory panel sounded like a potential recipe for further delay without necessarily providing a structure for ensuring that the funding goes to the workers.

Timeline still uncertain

But Baker’s veto also apparently has had the effect of eliminating a deadline of March 31, 2022, for the advisory panel to make its recommendations on the funding distribution.

According to the News Service, House Speaker Ron Mariano said Monday he had “requested a timeline from the administration on when they would be able to get the money out to essential workers so we can make an informed decision.” That decision apparently concerns whether and when to attempt to override the governor’s veto.

The News Service stated that in his veto, Baker wrote to lawmakers that he supports the premium pay program, but said the advisory panel was “virtually guaranteed to significantly hinder disbursement of the funds.”

The governor said his veto would allow his administration to “immediately begin the process of distributing these funds.”

“We could send out $500 checks to almost 1 million Massachusetts residents as soon as possible,” Baker wrote, according to the News Service. “Reinstituting the panel-driven process envisioned by the Legislature will simply disrupt the rollout midstream. We urge you to let our administration proceed with this important program today.”

We have raised other concerns about the state’s planned distribution of the federal funding as well.

Even when the ARPA money is finally distributed, we are concerned about a potentially low $2,000 ceiling set on the amount of funding per worker under the legislation. Also of concern is a lack of clear oversight of the distribution of the funding.

And it appears at least some of the funding is intended to be used to move residents out of the state’s two remaining developmental centers and into the already overburdened privatized group home system.

In sum, we’re happy that the bill to distribute the funding has finally been signed. But a half year after the federal money was sent to Massachusetts, it seems far from certain if and when those funds will get to the people the money is supposed to help.

Critically needed federal stimulus money still hasn’t come through for DDS residential providers facing staffing shortages

November 29, 2021 1 comment

Shannon Guenette still hasn’t seen any of the money even though Congress and the Biden administration released $8.7 billion in federal stimulus funds to Massachusetts last March.

“We’ve received some guidance (from the state regarding the funding), but we haven’t received any additional funds,” Guenette, executive director of Almadan, Inc., said five days prior to Thanksgiving. Almadan is a group home provider in the western part of the state to the Department of Developmental Services (DDS).

In August, Guenette told us her agency and other DDS providers throughout the state desperately needed the additional federal funding to retain workers in light of a worsening shortage of direct-care and clinical staff.

The Baker administration in Massachusetts has targeted hundreds of millions of dollars of the federal American Rescue Plan Act (ARPA) funding for human services workforce retention and recruitment.

But the state Legislature took months to come up with its own plans for distributing the funding after at least one legislative leader said they didn’t see a need for hurry.

Earlier this month, state legislators went home for their Thanksgiving recess without having reconciled Senate and House bills (S.2564 and H.4234) that specify differing distribution plans for the money.

Meanwhile, other than noting there will be three rounds of ARPA funding distribution, the administration itself has provided little clear information about the details of its distribution plan such as how many workers and which agencies would receive the money, and how much of that funding would go toward higher wages.

Under the administration’s plan, the first round of funding was supposed to augment provider rates by 10% from last July through December of this year. But, as noted, no money has reportedly been distributed for residential programs.

Repeated queries by COFAR to DDS Commissioner Jane Ryder and to Health and Human Services Secretary Marylou Sudders about the DDS staffing shortage and how to address it have gone unanswered.

Even when the ARPA money is finally distributed, we are concerned about a potentially low limit set on the amount of funding per worker under the Senate and House bills. Also of concern is a lack of clear oversight of the distribution of the funding.

And it appears at least some of the funding is intended to be used to move residents out of the state’s two remaining developmental centers and into the already overburdened privatized group home system.

A $2,000 limit per worker

Language in both the Senate and House bills would limit funding for higher wages to $2,000 per worker. It’s not clear how effective such a payment would be in recruiting and retaining workers, particularly if it is only a one-time payment.

The Senate bill would also establish an advisory panel to make recommendations to the administration regarding the “Essential Employee Premium Pay Program.” The panel’s report is due with its recommendations by March 31, 2022.

The advisory panel sounds like a potential recipe for further delay without necessarily providing a structure for ensuring that the funding goes to the workers.

The distribution of funding to workers may not have sufficient oversight

Information posted online by the administration requires DDS providers to attest or essentially promise that 90% of the additional ARPA funding they receive will be used for “compensation for their direct-care workforce.” That could include, “among other things,” hiring and retention bonuses.

While the providers will be required to submit spending reports, it isn’t clear that the administration has dedicated sufficient resources to auditing such reports and ensuring that the money is going in all cases to front-line staff.

State Auditor Suzanne Bump’s office reported in 2019 that increases in state funding to DDS and other providers resulted in surplus revenues for the providers, but that those additional revenues led to minimal increases in wages for direct-care workers.

According to Bump’s audit, while the increased state funding was at least partly intended to boost direct-care wages, it “likely did not have any material effect on improving the financial well-being of these direct-care workers.”

Some ARPA funding may be used to “divert” residents from developmental centers

According to the administration’s distribution plan, at least $44 million of the ARPA funding will be used starting in Round 2 to “divert” clients “towards community living … and away from facility-based settings.”

We are concerned that while at least some of this funding would reportedly be used to prevent the inappropriate placement of DDS clients in hospitals or nursing homes, a portion of the funding may be used to further reduce the population of facilities such as the Wrentham and Hogan developmental centers.  As such, this funding would only further reduce choices in residential care for DDS clients.

The residential population at both Wrentham and Hogan have been declining in recent years, and admissions to both facilities were zero in 2020.

Providers cite need for funding and higher pay for direct-care workers

In September, a provider-based “Collaborative” provided written testimony to the state Legislature’s Ways and Means Committee chairs seeking $174 million per year for five years in ARPA funding for human services organizations. The money was being sought “to provide recruitment and retention incentives to workers to help combat the workforce crisis in the sector.”

The Provider Collaborative testimony said the $174 million would affect about 34,800 staff earning less than $60,000, and nurses and clinicians earning less than $90,000.

The Collaborative noted that low wages paid to direct-care workers are a problem. “The low rates of pay for direct-care staff… coupled with complex, difficult jobs have led providers to struggle with recruiting and retaining workers even before the COVID-19 pandemic impacted programs,” the testimony stated.

The Collaborative blamed those low wages on the state’s “rate-setting process.” We think, however, that many providers, as the state auditor noted, could afford to pay more to their workers.

Shannon Guenette told us that Almadan is currently only able to pay its staff $15.25 an hour. The Collaborative stated that the median salary for direct-care workers is $16.79 an hour. According to the Collaborative, the MIT Living Wage calculator notes a living wage for a single person in the area is $17.74 an hour.

All of this points to the need for quick action to distribute the ARPA funding. It’s unfortunate that legislative leaders don’t appear to recognize that there is, and has been, a need for hurry. There is also a need for effective oversight of the funding to make sure it gets to those workers.

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

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.

 

 

 

DDS state-operated group homes facing a staffing and possible closure crisis

October 22, 2021 11 comments

State-operated group homes for persons in Massachusetts with developmental disabilities appear to be facing a perfect storm of staffing shortages, potentially unvaccinated staff, and a possible departmental effort to shut at least some of the residences down.

The staffing shortages are also affecting the much larger network in the state of corporate provider-operated group homes funded by the Department of Developmental Services (DDS). But we are increasingly concerned that the critically important state-run DDS group home network could be facing a crisis that could threaten its long-term existence.

We often advise families whose loved ones are experiencing poor care in provider-run residences to ask for placements in available state-run group homes. Staff in the state-run network generally receive higher pay and benefits and more training than their counterparts in the provider system.

Resident moved without notice

This week, we received a report that a state-run group home in western Massachusetts was being closed and that at least one of the residents was moved without written notice as of Thursday (October 21) to a location in another town.

Earlier this month and this week, we received reports from a COFAR member that up to seven state-run homes in the southeastern region of the state had been closed because staff in them had not been vaccinated for COVID-19.

We have not been able to confirm those reports about closures of homes in southeastern Massachusetts. A DDS official privately told a COFAR member that no state-operated group homes had yet been closed in the region as of mid-October, but that some closures could happen after October 17. The official referred to the possibility of “temporary consolidations” of group homes around the state.

In August, Governor Baker issued an executive order requiring all state employees to be vaccinated by October 17 or ultimately be terminated. While the executive order apparently applies to staff in state-operated group homes and the Wrentham and Hogan Developmental Centers, the separate provider-operated DDS group home system is apparently not subject to the vaccination mandate.

It is not clear how many staff in the DDS group home system remain unvaccinated. As of last April, the last time EOHHS apparently tracked staff vaccinations, less than 50% of staff in state-operated DDS group homes were fully vaccinated, and only 51% of staff in provider-run group homes were fully vaccinated.

Administration officials not commenting

On October 14, we emailed DDS Commissioner Jane Ryder and the press office at the Executive Office of Health and Human Services (EOHHS) with questions about the reports of closures and consolidations in the state-operated group home network.

To date, Ryder has not responded to our query. A spokesperson for EOHHS said we would have to file a Public Records Request for that information.  On October 15, we filed a Public Records Request, and EOHHS responded that same day that that agency did not have any records relevant to our query.

DDS regulations may be violated by sudden closures

Under DDS regulations (115 CMR 6.63), DDS clients cannot be transferred without a 45-day notice and the opportunity for a hearing unless the the Department determines that the transfer is “an emergency involving a serious or immediate threat to the health or safety of the individual or others.”

Western Mass DDS staff urge Ryder to address staffing shortages

Meanwhile, on Wednesday (October 20), the Massachusetts Nurses Association, a union that represents nurses in the DDS system as well as hospitals around the state, reported that several DDS employees in western Massachusetts had sent a letter in late September to Commissioner Ryder “imploring her to intervene in a growing patient-care crisis that is unfolding in many of the region’s DDS group homes.”

The letter stated that staffing shortages in both state-operated and provider-operated group homes were causing “significant increases” in client injuries requiring emergency room treatment, and in the placement of untrained staff in homes.

The MNA letter said some staff were being forced to work overtime due to staffing vacancies, and that one staff worker was reportedly required to work 48 hours straight.

The MNA letter to Ryder was dated September 21. The union said that as of October 20, Ryder had not responded.

COVID rates in the DDS group home system continuing to climb slowly

In the midst of the continuing staffing and apparent vaccination problems, the latest online COVID testing report from EOHHS shows a slow, but continuing increase in individuals testing positive in DDS state and provider-run group homes. In state-operated group homes, the number of residents testing positive rose from 3 to 6.

Among staff in the state-operated group homes, the number of those testing positive rose from 11 to 12 between September 7 and October 5.

In provider-run homes, the number of residents testing positive jumped from 31 in September to 49 in early October. The administration, however, does not report the number of staff testing positive in the DDS provider-run system.

Census in state-ops and ICFs declining

Whether or not there are plans to close state-operated group homes or the Wrentham or Hogan Developmental Centers, the administration has nevertheless been letting the residential populations or census drop in these facilities. In addition, funding for these facilities has dropped or has remained flat for years. (See here and here.)

Documents provided by DDS on September 21 in response to a Public Records Request for records on the number of admissions to state-operated group homes, confirm that the census in those facilities has been declining since Fiscal Year 2015. We previously received information from DDS showing a decline in the census and virtually zero admissions in 2019 and 2020 at the Wrentham and Hogan Centers.

The census in DDS provider-operated group homes grew by an average of 124 residents per year between Fiscal Years 2008 and 2021. However, the census in state-operated group homes grew by an average of only 3 residents per year.

Moreover, since Fiscal 2015, the census in state-operated group homes has actually dropped by an average of 18 residents per year while the census in provider-operated group homes has continued to grow by an average of 83 residents per year. The number of residents in state-run group homes was almost 10% lower in Fiscal 2021 than in 2015.

The data show there have been admissions each year to the state-operated homes.  But those admissions have apparently been more than offset by deaths in those residences.

Future is concerning

In sum, all of these numbers and trends are concerning, as is the administration’s policy not to respond to questions either from us or from unions such as the Mass. Nurses Association.

We may learn a little more if DDS does provide records relevant to our Public Records Request concerning the reported state-operated group home closures.  But in the meantime, we are left to wonder what the administration is planning to do – or is actually doing — to address the staffing shortages in the DDS system.

At the very least, we hope the administration doesn’t view the staffing shortages and the problem of unvaccinated staff as opportunities to further downsize the state-operated group home system.

Video has a controversial and disturbing, but important message about autism

October 8, 2021 4 comments

Several advocacy organizations for people with autism have produced a disturbing video that conveys an important message.

The message, which is actually controversial, is that autism can be a debilitating condition for some people. Contrary to what has become a politically popular ideology, there are people with developmental disabilities who cannot function in mainstream society.

The video, sponsored by Act Now for Severe Autism, the VOR, the National Council on Severe Autism (NCSA), ICF Advocates for Choice, and other organizations, displays severe autistic behavior in graphic detail, and therefore may be difficult for some people to watch.

Many people, however, may not be aware that autism is a “spectrum disorder,” which the Autism Research Institute (ARI) describes as appearing “in a range of forms and levels of severity.”

The video shows children with very severe autism engaging in violent behavior, mainly against themselves. They scream and hit themselves repeatedly in the head, or bang their heads against hard objects – hard enough to cause serious injuries such as detached retinas. They physically attack caregivers and family members, leaving them injured as well.

It is difficult to watch, but videos like this are necessary to convey an inconvenient truth about developmental disabilities to the public and to policy makers and journalists, and even to misguided activists for the disabled. Many of these policy makers and activists have promoted the mistaken ideology that every individual has unlimited potential for achievement in mainstream society, and that autism is not even a disability.

As the NCSA stated in a letter to The New York Times, this viewpoint even led one author to advise parents of children with autism that their children are “perfect.”

And as noted below, this ideology has been associated with the closure and privatization of congregate care facilities for persons with developmental disabilities and with efforts to end guardianship of those persons by family members.

But as Lee Elizabeth Wachtel, medical director of the Neurobehavioral Unit at the Kennedy Krieger Institute, wrote:

When an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm, or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied.

What the video is getting at, in our view, is the importance of distinguishing between different degrees of disability in setting policy for people with disabilities.

We think the failure to make those distinctions is what is in common among the movements to further deinstitutionalize and privatize services to the disabled, end guardianship, and close sheltered workshops, among other programs and services.

Those movements have had a major impact, causing policy makers and the media to overlook the needs and, in some cases, even the existence of people with the most severe levels of autism and other disabilities.

Attacks on guardianship

The failure to recognize different levels of disability is behind a growing movement to replace guardianship with Supported Decision Making (SDM). SDM is an arrangement in which individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, and living arrangements, and in other areas.

In typical fashion, SDM bills currently pending in the Massachusetts Legislature (H.272 and S.124) avoid the question whether everyone is really capable of making their own decisions in those very important areas. SDM proponents don’t appear to recognize that there are some individuals who do not have the cognitive skills necessary to make reasonable decisions. Those people need guardians – preferably guardians who are family members.

It should be clear from the video on severe autism behaviors that the children engaging in those self-injurious actions are not in a position, and may never be in a position, to be able to make their own life choices.

Yet one of those SDM- promoting groups – the Autistic Self-Advocacy Network – states on its website that:

People with disabilities usually get put under guardianship because other people think we can’t make choices. This is bad. People with disabilities want to keep the right to make our own choices.

Integrated employment

The ideology that everyone can function in mainstream society led to the closures of all remaining sheltered workshops in the state in 2016.

The charge was that the workshops limited the potential of the clients by keeping them out of the mainstream workforce. But the result has been that hundreds if not thousands of clients of the Department of Developmental Services (DDS) have been left in DDS day programs with little or nothing to replace the work opportunities they previously had.

For a potentially significant number of DDS clients, mainstream work settings have never been a viable option. Those persons aren’t able to function in those settings or don’t desire to do so.

It’s all about money and privatization

The ideological position that the community-based system of care is working perfectly for everyone fits with a decades-long push by successive administrations in Massachusetts and corporate providers for more privatization of the DDS system. According to the ideology, all persons with developmental disabilities can reach their full potential in the community system, unlimited by institutional constraints.

But as the video narrator notes, people with severe autism need “a continuum of care that includes intensive and specialized services that are usually provided in disability-specific educational, vocational, and residential settings.”

As the narrator says, parents of persons with severe autism are looking for a “seat at the table” when it comes to setting policy for caring for persons with developmental disabilities. They want policy makers to recognize that given the wide range in the severity of autism and other developmental disabilities, one-sized policies don’t fit all.

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