Archive for March, 2020

DDS must develop a clear coronavirus policy for residential facilities and providers

March 26, 2020 5 comments

As the number of people infected with the coronavirus continues to grow in Massachusetts, the Department of Developmental Services (DDS) appears to lack a clear and consistent set of policies and plans for protecting residents in its group homes and other residential facilities.

Instead, there appears to be a patchwork of statements and sometimes contradictory policies on the DDS coronavirus website page.

We are concerned that to the extent DDS has developed policies on how residents should be cared for and what precautions should be taken by staff, current protocols will be inadequate to protect residents of any DDS-run or corporate provider-run facility should one or more of the residents become exposed to or infected by the virus.

At least one set of guidelines sent out by DDS to providers this past weekend appears to imply that residents of group homes must be removed from those facilities if even one resident becomes infected. But DDS appears to have no plan for where those residents would be taken.

If residents in several homes become infected, the system could become quickly overwhelmed.

In phone contacts on Wednesday (March 25), DDS officials acknowledged the Department has no long-term plan for relocating infected residents from their residences if the pandemic becomes worse.

We are recommending to DDS that a single, comprehensive plan be developed immediately to address all contingencies in the Department’s residential system, including the possibility of removing infected residents from group homes and placing them in DDS-run hospital settings. That might involve re-purposing closed day program facilities or finding and re-purposing available space in the state’s two remaining Intermediate Care Facilities (ICFs).

We have already heard of instances in which individual providers have opened new group homes or re-purposed existing facilities to be able to respond to those contingencies.

Current guidance documents are contradictory and potentially inadequate 

DDS appears to have been relying on a guidance document from the Department of Public Health (DPH) to cover COVID-19-related precautions and procedures in residential programs in the DDS system.

The March 16 DPH guidelines state, among other things, that patients with known or suspected COVID-19 should be cared for in a single-person room with the door closed.

But COFAR Board President Thomas J. Frain said he is concerned that most group homes are too small to ensure that an infected or ill resident could be effectively isolated from the other residents of the residence.

Meanwhile, a second guidance document, dated March 20, which DDS informed Frain had been sent to all providers this past weekend, appears to imply that any resident of a “household”-sized facility who is suspected of even having had “close contact” with someone known to have the virus should be removed from the residence for 14 days.

Group homes are effectively households, Frain said. If one person does test positive for the virus, everyone else in the residence will essentially have had close contact with them. So the second directive would imply that if one person is exposed or is sick with the virus, everyone would need to be quarantined, meaning they would have to be taken somewhere else for 14 days.

Frain maintained that group homes, which often utilize shared bathrooms, are not large enough to isolate an ill resident and protect other residents from becoming infected by the first resident or by infected staff.

The problem is compounded by the fact that DDS has no plans for how to remove and quarantine infected residents safely, promising only to develop them in the future.

High-level advocacy needed for persons with intellectual and developmental disabilities

COFAR stressed to DDS officials the need to advocate on behalf of DDS clients and their families with Health and Human Services Secretary Marylou Sudders and with Governor Baker. “These most vulnerable members of our society have many competing interests from other populations and agencies, but DDS residents cannot self-advocate,” COFAR Executive Director Colleen M. Lutkevich said.

Lutkevich maintained that the lack of planning and advocacy extends to DDS clients in settings other than group homes such as adult foster care and staffed apartments, and even to individuals living at home with their families. “If a person lives alone in an apartment, and even if DDS staff checks on them – what happens when that person becomes ill?” Lutkevich asked.

COFAR suggests repurposing of available facilities

COFAR is urging DDS to require each provider to develop a plan to remove and relocate residents if group homes are forced to close due to infection and quarantine. Those plans could include the re-purposing of currently closed day programs and their staffs, empty quarters or buildings at ICFs, and other appropriate and available locations.  Several providers are already beginning to work on this, and their models of re-purposing facilities could be shared with other providers.

In addition:

  • DDS and the Baker administration should seek out federal disaster assistance for help with relocation and care of infected group home and other facility residents.
  • Ongoing staff training is needed, particularly if day program staff are retrained to help care for ill residents.

Single set of guidelines needed

We think all of the plans described above need to be part of a single, comprehensive set of guidelines that should be developed for all of DDS’s residential facilities, both state and corporate-provider-run, during the pandemic.  That comprehensive policy document should be communicated in writing to all facility managers.

A primary function of DDS is to make sure its residents are protected, whether in a state-operated group home, a corporate-operated group home or an ICF. DDS regulations define a “serious risk of harm” as “a significant exposure to serious physical injury or serious emotional injury.”

DDS’s current policies do not inspire confidence that the department is currently able, in this ongoing pandemic, to meet the standards for protection and safety that are codified in its statute and regulations.

Reducing the impact of the coronavirus on persons with developmental disabilities

March 20, 2020 1 comment

As the conoravirus pandemic grips our nation and so many other countries around the world, we are joining with other advocacy groups in urging policy makers and elected officials to be mindful of the especially devastating impact this illness can have on persons with intellectual and other developmental disabilities (I/DD).

We are trying to do our part in making the public aware that because so many people with I/DD have underlying medical conditions, they are likely to be among the groups with the highest rates of mortality from the COVID-19 virus.

New COFAR coronavirus information page and recommendations on testing and visitation 

Today, we launched a new coronavirus information page on our website at that is intended as a resource for families seeking information about the coronavirus and how to advocate for and protect their loved ones in the care of the Department of Developmental Services (DDS).  You can link directly to the page here.

One of our main recommendations on the new page so far is that if a resident, or staff member caring for a resident, tests positive or is exposed to the coronavirus, family members and guardians should be informed immediately.

We are also concerned that DDS and at least some residential providers may not be implementing uniform policies on visitation of loved ones and testing of healthcare workers in group homes and other residential settings.

We are recommending that all DDS residential facilities adopt the state Public Health Department’s policy regarding access by healthcare workers to nursing homes. Those facilities must confirm that the healthcare worker does not have a fever by taking each worker’s temperature upon arrival for each shift.  The healthcare worker’s temperature must be 100.3 degrees Fahrenheit or lower in order to enter the facility and provide care.

We are also recommending that consideration be given to visits by family and guardians and that they be subject to the same restrictions as those placed on staff. In general, we recommend that visits be relegated to outdoor areas (weather permitting), after hand-washing and maintaining at least a 6-foot social distance between people.

Federal legislation on coronavirus needs to take people with I/DD into account

We are also joining other advocacy organizations in noting that while Congress has so far passed two major coronavirus-related relief bills, more help is needed to support people with disabilities and their families.

We are urging our members to call or email their congressmen/women and senators and ask them to support increased federal funding for coronavirus-related relief programs for persons with developmental disabilities.

Congress has so far passed two major coronavirus bills, but more help is needed to support people with disabilities and their families. The most recent legislation enacted is the Families First Coronavirus Response Act, which includes:

  • A 6.2% increase in federal reimbursement for state Medicaid programs (FMAP), which will help state governments in their efforts to combat the pandemic
  • $250 million in additional funding for food programs, including home delivery food programs, for the elderly and disabled
  • Waivers to some requirements for school lunch programs
  • Waivers to work requirements to be eligible for SNAP food programs
  • New, temporary requirements that employers with more than 20 employees offer some paid sick leave time to their employees
  • Extensions to, and additional funds for, unemployment benefits
  • Free COVID-19 testing without co-pays or deductibles

But the legislation does not include funding for caretakers for adults with disabilities or seniors whose programs have closed or whose workers are sick.

A major stimulus package was still pending today (March 20) in Congress that will reportedly provide cash payments directly to most Americans. There are many questions, however, about what that legislation will include. We want to make sure the pending legislation covers additional money for caretakers of adults with disabilities whose programs have closed or whose workers are sick.

We are also requesting that people ask members of Congress to support increased asset limits for people with I/DD receiving Supplemental Security Income (SSI) and/or Medicaid. Because of those asset limits, people with I/DD may end up with too much money in the bank, jeopardizing their SSI and/or Medicaid benefits.

You can find your elected representatives here:

You can also send questions or concerns to us by emailing either Colleen Lutkevich at, Thomas J. Frain, Esq. at, or David Kassel at We will forward your concerns to DDS.

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

March 12, 2020 1 comment

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

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

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

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

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

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

Michael and Maria Person1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Maria recovering at BCH

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Maria with pureed foods

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

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

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

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

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

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

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

Perkins School had emphasized need for food to be pureed

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

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

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

Michael was only fully interviewed once by the DPPC investigator

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

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

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

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

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

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

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

The case appears to present evidence of omission of care

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

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

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

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

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

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

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

March 2, 2020 5 comments

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

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

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

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

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

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

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

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

Ellen and Carole photo2.jpg

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

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

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

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

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

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

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

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

Family disputes diagnosis of delusions

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

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

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

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

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

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

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

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

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

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

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

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

Left alone twice

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

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

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

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

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

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

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

C.J. photo1

C.J. on a family outing.

Inappropriate placement on anti-psychotic medication

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Violations of regulations

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

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

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

Left alone for first time in group home

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

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

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

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

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

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

Left alone for second time

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

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

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

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