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Posts Tagged ‘abuse and neglect’

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

August 2, 2021 5 comments

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

In their view, he was having trouble breathing.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DDS finds insufficient evidence of neglect

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

Untreated groin infection

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

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

Care was better at Glavin

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

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

Similarity to other cases 

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

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

Nick’s case

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

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

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

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

Maria’s case

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

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

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

Yianni’s case

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

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

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

Please urge support for H.1733

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

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

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

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

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

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

June 29, 2021 9 comments

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

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

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

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

Valerie Loveland

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

Tide may have turned

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

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

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

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

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

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

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

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

Son’s care has taken a financial toll

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

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

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

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

May Institute executives well compensated

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

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

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

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

Saw diet as cause of problems

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

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

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

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

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

Pushback on other efforts to protect son

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

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

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

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

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

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

Denied use of bathroom

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

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

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

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

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

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

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

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

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

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

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

November 12, 2020 51 comments

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

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

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

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

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

Nick Alemesis and his mother, Cindy

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

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

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

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

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

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

Support from church pastor 

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

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

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

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

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

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

Cindy at Nick’s bedside in the hospital

Doctor stipulates to missed ultrasound appointment

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

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

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

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

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

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

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

DDS and provider apparently failed to report hospitalization

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

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

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

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

Missed appointments continue

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

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

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

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

DPPC screens out recent complaint

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

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

DDS attorney threatened to take away co-guardianship in 2019

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

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

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

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

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

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

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

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

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

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

Case fits a pattern

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

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

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

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

What you can do

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

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

Questions surround supervision of DDS client with violent history

October 26, 2020 7 comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

September 27, 2020 6 comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

August 21, 2020 2 comments

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

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

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

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

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

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

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

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

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

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

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

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

March 12, 2020 Leave a comment

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

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

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

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

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

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

Michael and Maria Person1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Maria recovering at BCH

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Maria with pureed foods

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

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

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

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

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

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

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

Perkins School had emphasized need for food to be pureed

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

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

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

Michael was only fully interviewed once by the DPPC investigator

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

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

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

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

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

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

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

The case appears to present evidence of omission of care

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

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

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

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

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

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

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

March 2, 2020 5 comments

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

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

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

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

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

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

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

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

Ellen and Carole photo2.jpg

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

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

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

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

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

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

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

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

Family disputes diagnosis of delusions

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

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

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

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

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

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

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

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

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

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

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

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

Left alone twice

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

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

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

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

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

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

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

C.J. photo1

C.J. on a family outing.

Inappropriate placement on anti-psychotic medication

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Violations of regulations

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

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

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

Left alone for first time in group home

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

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

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

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

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

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

Left alone for second time

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

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

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

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

January 21, 2020 2 comments

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

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

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

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

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

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

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

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

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

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

Guidewire details underscore the need for Nicky’s Law

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

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

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

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

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

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

Rest of the media needs to examine these issues

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

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

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

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

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

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

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

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

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

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

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

 

 

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

January 15, 2020 Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Section 17 isn’t necessary

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

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

The Public Records Law presumes state agency records are public

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

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

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

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

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