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Families want legislative committee to know the value of places like the Wrentham Developmental Center

January 16, 2018 Leave a comment

As a legislative committee prepares for an oversight hearing Wednesday on the Department of Developmental Services system, several family members of residents of the Wrentham Developmental Center said they hope the committee will recognize the Center’s value and that of facilities like it.

In a COFAR membership meeting on Saturday, family members described harrowing accounts of their experiences in privatized, DDS-funded group homes, and the arduous paths they had to take in order to get their loved ones into either the Wrentham Center or state-run group homes.

Many of those family members, such as Pat and Michael Horn, plan to submit written testimony about those experiences to the Legislature’s Children, Families, and Persons with Disabilities Committee, which has scheduled an oversight hearing on DDS on Wednesday. (As we have noted, the committee announced that family members would not be allowed to testify before the committee in person, but could only submit written testimony.)

“The care here (at Wrentham) is exquisite,” said Pat Horn, whose daughter, Alexa, had suffered broken bones and other unexplained injuries in a corporate provider-run group home before they got her to Wrentham. “We’re so happy here.”

Pat and Michael Horn

Pat Horn (at right) and her husband, Michael, describe their experience in getting their daughter, Alexa, to the Wrentham Developmental Center. At left is Susan Tucker, a physician, whose brother, Danny, is also a Wrentham Center resident.

COFAR Executive Director Colleen Lutkevich, whose sister, Jean, is a Wrentham Center resident, said the legislators and others may not fully understand the true nature of the problems that afflict the DDS system today.

In recent decades, Lutkevich said, it has been the rapidly growing, privatized group home system that has exhibited serious problems with care and with abuse and neglect. State-run facilities such as the Wrentham Center and an existing network of state-run group homes have been relatively free of those problems.

Yet, the Wrentham Center has been “terribly misrepresented” in the media and by opponents of congregate care, who characterize it as an institution or as a warehouse, Lutkevich said. “What the media and many others don’t understand is that the care today is state of the art at Wrentham and Hogan (the second of the state’s two remaining developmental centers, also known as Intermediate Care Facilities or ICF’s).”

At Saturday’s COFAR meeting, some families expressed concern about rumors that DDS intends to close Wrentham and Hogan through attrition if not sooner. DDS data show that the residential population in each facility has leveled off and begun to drop. And despite the high level of care available in each, most clients waiting for care in the DDS system are not offered placements at either Wrentham or Hogan even if they ask for them.

Families waiting for residential care for loved ones are routinely offered placements only in DDS-funded, privatized group homes. The families are usually not informed even about the state-operated group homes even though those facilities have staff that tend to be better trained and better paid that than direct-care staff in the corporate-run homes.

Lutkevich and COFAR President Thomas Frain, who both attended Saturday’s membership meeting, discussed a DDS document that families waiting for residential care are required to sign, waiving their loved ones’ legal right to care in the state’s two remaining ICFs. Frain and Lutkevich maintain the document is coercive and possibly violates federal Medicaid law, which requires the state to offer all available residential facilities as care options to people who request them.

Frain went through a lengthy battle with DDS to get his brother, Paul, out of a provider-run group home, where he had been badly mistreated, and into a state-operated group home.

Families such as the Horns have been able to get their family members into Wrentham only because those family members were either literally facing life-and-death situations or because they were members of the original class-action lawsuit (Ricci v. Okin) that resulted in major upgrades to the Massachusetts DDS system in the 1980’s.

A disturbing litany of mistreatment

In the Horns’ case, their daughter, Alexa, who has Rett Syndrome, a neurological disorder, had lived at home until she was 16 and a half. At that time, the Horns explored the possibility of getting Alexa into the Fernald Developmental Center, but they were told Fernald was closing.

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

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

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

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

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

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

Pat said the DPPC did a three-month investigation of the incident and substantiated a charge of mistreatment, but was unable to determine how the injury had happened. The DDS “action plan” recommended only staff retraining.

During the three-month period in which the family was waiting for the results of the investigation, Alexa suffered a fracture of her upper left arm. That injury was investigated by DDS, which concluded that she had broken her own arm as her medical record showed that she had osteoporosis. The Horns consider it highly improbable that Alexa broke her own arm.

The Horns then arranged to have Alexa sent to the Marquardt skilled nursing facility at the former Fernald Center rather than to have her discharged back to the group home.

A few weeks later, Pat said, she and Michael met with the DDS area director, Alexa’s DDS service coordinator, and administrators from the group home provider during which the Horns recounted six months worth of mistreatment that their daughter had endured. At the end of this meeting, the DDS area director said that since  Alexa would “‘undoubtedly be difficult to place,'” she might have to be sent back home to her parents. According to Pat, that “sounded very much like a threat.”

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

In August of 2016, the Horns learned that the Marquardt center was going to be closed, and Alexa finally became a resident of  the Wrentham Center in February of 2017.

Yianni Baglaneas’s parents attend COFAR meeting

Also attending Saturday’s meeting were Anna and James Eves, the parents of Yianni Baglaneas, whose case sparked the Children and Families Committee hearing.

membership meeting 1.13.18

Attendees at Saturday’s COFAR meeting.

In her own written testimony to the Children and Families Committee, Anna Eves said that since the news got out that Yianni had nearly died in his group home after aspirating on a piece of cake, other people began contacting her about similar cases involving their loved ones. “As I looked further, I was shocked and saddened and outraged that this truly is an epidemic – the DPPC receives 10,000 calls a year – 10,000. And they only have five investigators, which tells you how much we as society care about this epidemic of abuse.”

During Saturday’s COFAR meeting, Kathleen MacKechnie described a difficult, eight-month process of getting her brother, Tom, into the Wrentham Center.  In her written testimony to the committee, she suggested that the committee “consider better funding
and monitoring (of DDS care) rather than budgetary cuts, and stop turning a blind eye to the problem.”

Also attending the Saturday meeting was Pat Feeley, who was nearly removed as guardian of her son, Michael, by DDS after she advocated for full-time nursing care for him.

Other attendees of Saturdays’ meeting who have family members at Wrentham included Mitch Sikora, whose brother has been at the Center for many years, and Mary McNamara, whose uncle has been a long-time resident there.

Lutkevich said she is organizing a legislative breakfast at the Wrentham Center for early March. The breakfast will be sponsored by COFAR and its affiliated family-based organization, the Wrentham Association.

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Committee won’t allow DDS clients and families to speak at oversight hearing on DDS care

January 11, 2018 5 comments

On Wednesday (January 17), the Legislature’s Children, Families, and Persons with Disabilities Committee will hold what may be the first oversight hearing in its history to examine problems with care of persons with developmental disabilities in Massachusetts.

The bad news is that those individuals and their families and guardians will not be allowed to speak during the hearing.

A news release issued by the committee states that “verbal testimony” will be taken only from representatives of DDS and the Massachusetts Disabled Persons Protection Commission (DPPC). (The DPPC is an independent but seriously understaffed agency that is charged with investigating allegations of abuse and neglect in the DDS system, but which refers the vast majority of those cases to DDS itself for investigation.)

I confirmed the details of the news release today with the committee and asked a staff member to convey our disappointment in it to Representative Kay Khan and Senator Joan Lovely, the committee co-chairs.

The news release notes that DDS clients, family members, guardians, and members of the public are “invited” to attend the hearing and listen to the testimony, and are even “encouraged” to submit written testimony to the committee.  But the committee isn’t interested in hearing about their experiences directly.

This explains why the committee has devoted only half a day to this critically important issue of abuse and neglect in the DDS system. The hearing is scheduled to begin on Wednesday at 1:30 p.m. in Room A2 of the State house.  It shouldn’t take long if the committee intends only to ask questions of selected officials from DDS and the DPPC.

What we are hoping is that people will submit written testimony and request in their testimony that the committee hold another hearing so that they can testify in person. That written testimony can be submitted via email to Kay.Khan@mahouse.gov, or mailed to: Joint Committee on Children, Families, and Persons with Disabilities c/o Representative Kay Khan, State House, Room 146, 24 Beacon Street, Boston MA, 02133.

The committee scheduled the hearing in the wake of a case last year in which a young man nearly died in a DDS-funded group home after aspirating on a piece of cake.

We have been calling for years for a comprehensive legislative review of the system of care for persons with developmental disabilities in Massachusetts. The last such review was done in the late 1990’s by the Post Audit and Oversight Committee, which found problems of abuse, neglect, and financial irregularities throughout the system.

The Post Audit report stated that DDS’s oversight of privatized care, in particular, raised “grave doubts about (DDS’s) commitment to basic health and safety issues and ensuring that community placements provide equal or better care for (DDS) clients.”

Some 20 years later, as we have previously noted, it does not appear that much has changed. The association of poor oversight with increased privatization and abuse and neglect is still the case, and inadequate care and conditions remain all too common in group homes and other state-funded facilities in Massachusetts and around the country.

Unfortunately, since the Post Audit Committee’s report was issued in 1997, it doesn’t appear as if the Legislature has committed itself to grappling with these problems in a serious way. Unless and until Representative Khan and Senator Lovely agree to listen directly to the families and guardians affected by the DDS system, we don’t see much to indicate that the Legislature has gotten serious about that.

Committee to schedule one or more oversight hearings on DDS system

December 12, 2017 Leave a comment

In the wake of findings by the state of negligence by the staff of a human services provider that almost resulted in the death of a developmentally disabled man, a legislative committee plans to hold one or more hearings on the Department of Developmental Services system, starting next month.

A press release issued by the state Legislature’s joint Children, Families and Persons with Disabilities Committee referred to a single hearing and said it will concern “current  DDS policies, procedures, and responses to reported incidents.” The press release did not specify a date for the hearing, but said it will be held “in the New Year.”

A staff member of the committee said last week (on December 7) that a specific date had not yet been set for the hearing, but that it would be held sometime in January. Previously, another staff member had stated that more details about the scope of the committee’s review, including whether the committee would focus on the privatized system of DDS care and whether there might be more than one hearing still needed to be ironed out.

COFAR is inviting people with information about abuse or neglect in DDS-funded group homes in Massachusetts to testify before the committee. If you have information you would like to share, please contact us.

In the case that apparently sparked the committee’s interest, a DDS investigation concluded in September that seven employees of Bass River, Inc., a DDS provider, were at fault after Ioannis “Yianni” Baglaneas, a 29-year-old man with Down Syndrome, contracted severe pneumonia in his group home after aspirating on the cake.

The DDS cited the staff for failing to ensure that Yianni regularly used required breathing equipment that could have prevented the pneumonia; and the report stated that a high-level Bass River employee removed key records from the home and instructed the staff not to cooperate with the DDS investigation.

COFAR has urged legislators for several years to hold oversight hearings as part of a comprehensive legislative investigation of the DDS group home system.  To date, no such investigation has been undertaken by the Legislature since the late 1990’s when the House Post Audit and Oversight Committee examined the group home system and found systemic problems with abuse, neglect, and financial irregularities.

The Post Audit report stated that DDS’s oversight of the privatized system raised “grave doubts about (DDS’s) commitment to the basic health and safety issues and ensuring that community placements provide equal or better care for (DDS) clients.”

Now, 20 years later, it does not appear that much has changed in the system. The association of increased privatization with poor oversight and abuse and neglect is still the case, and inadequate care and conditions remain all too common in group homes in Massachusetts and around the country.

AFSCME Council 93, a union representing state, county and municipal workers in Massachusetts, recently endorsed COFAR’s call for hearings, sharing COFAR’s previous post on the subject on the union’s Facebook page on November 28.

COFAR is continuing to urge people to call Representative Kay Khan, the House chair of the Children and Families committee (617-722-1230), or Senator Joan Lovely, the Senate chair ( 617-722-2011), to express support for  multiple and comprehensive hearings. We are also, as stated, are urging people to contact us about testifying before the committee.

“We certainly hope that the committee will thoroughly investigate this very critical issue,” said Colleen M. Lutkevich, COFAR’s executive director. “We hope they will zero in on the key problems that have resulted from runaway privatization of services with inadequate oversight.”

It’s time for the Legislature to investigate the privatized DDS system

November 13, 2017 1 comment

Although seven employees of a corporate provider have been found to be at fault in a case in which a developmentally disabled client nearly died in a group home after aspirating on a piece of cake, we hope the Baker administration, the Legislature, and the media will not treat this as an isolated case.

We understand that the Department of Developmental Services has issued an “action plan” in response to this incident, and the Legislature’s Children, Families, and Persons with Disabilities Committee is reviewing documents regarding the matter.

The Essex County District Attorney has opened an investigation that could result in the lodging of criminal charges against one or more of the employees of the Beverly-based provider, Bass River, Inc.

Both The Boston Globe and The Salem News have reported (here and here) on the DDS investigation of the case, which found that inadequate care by the staff of the group home caused the 29-year-old man, Yianni Baglaneas, to contract severe pneumonia nearly a week after he reportedly aspirated on the piece of birthday cake on April 9.

The DDS report also alleged that a high-level Bass River employee attempted to obstruct the investigation by instructing group home staff not to cooperate with the investigation and by removing records from the residence.

On April 15, Yianni was admitted to Addison Gilbert Hospital in Gloucester in critical condition, six days after aspirating on the cake, and then spent 11 days on a ventilator and a week in the Intensive Care Unit at Mass. General Hospital.

Despite the relatively quick response to the DDS report by the legislative committee and others, what we haven’t yet seen is evidence that those in administrative and other positions of authority understand or are concerned that Yianni’s case is a symptom of a larger problem. He is the victim of a dysfunctional system overseen and managed by the DDS that is rife with abuse and neglect and a disregard for the rights of developmentally disabled individuals and their families. It is also a system that has been subject to extensive and ongoing privatization.

On October 25, we emailed the chairs of the Children and Families Committee, urging them to hold hearings on those larger issues. Two days later, the chief of staff to Representative Kay Khan, the committee’s House chair, emailed back saying the committee chairs were taking “immediate action” and were requesting documentation from “a number of agencies in order to obtain more details about this serious incident.”

The email from Khan’s chief of staff said that as soon as Khan’s office had reviewed the documents, the chairs would “make a determination about pursuing next steps regarding the DDS group home system.”

We are glad that the committee chairs recognize the seriousness of Yianni’s case and that they are considering next steps regarding the group home system. At the same time, the chief of staff’s email doesn’t make clear that the chairs are cognizant that there is a system-wide problem involved here.

The chief of staff’s email states only that the committee chairs have requested documentation about Yianni’s particular case. I’m not sure how they get from there to being able to make a determination about next steps regarding the entire group home system.

It would seem that the committee should request a much broader set of documentation than the documents relating to just this one case. In our October 25 email, we offered to assist the committee in gathering information on the problems affecting the system as a whole. To date, the committee has not sought any further information or help from us.

Meanwhile, the Globe’s editorial page rejected an op-ed we submitted in which we similarly tried to place Yianni’s case in the context of the wider group home issues. It’s concerning that the most powerful media outlet in the state does not seem to be interested that there is a wider problem that potentially affects thousands of people in the DDS system.

As a nonprofit advocacy organization for persons with developmental disabilities and their families, we have followed this situation for many years. The association of increased privatization with poor oversight and abuse and neglect is not coincidental. The inadequate care and conditions in Yianni’s group home that led to his near-fatal pneumonia are all too common in group homes around the country.

In 2013, after The New York Times and The Hartford Courant both ran separate investigative series on abuse and neglect in group homes in their respective states, U.S. Senator Chris Murphy of Connecticut called for a federal investigation of deaths and injuries in privatized care. Unfortunately, such a comprehensive federal investigation has still not been undertaken.

It is important to place the present-day state of affairs within the DDS system in an historical context. Until the early 1990s, the system was dominated in Massachusetts and other states by large, poorly run institutions. Those facilities were grossly unsanitary and were essentially warehouses of abuse and neglect.

That all changed starting in the 1970s when federal courts around the country issued consent decrees in response to class-action lawsuits, and required substantial upgrades in care and conditions in the existing institutions. At that same time, a new system of smaller, privately run but state-funded group homes began to appear as residential options for many of the former residents of the larger institutions. A network of state-run group homes was created as well in Massachusetts.

During the past 20 years, the privatized group home system has overtaken and surpassed both the state-run group home network and the large facilities both in terms of state funding and number of residents. All but two of the large facilities have been closed in Massachusetts.

But the new system of thousands of dispersed group homes has its own set of structural problems. This system that replaced the large, centralized facilities has been much harder for the state to monitor with regard to care and conditions and with respect to the finances of the nonprofit agencies that directly operate the residences. In addition, the group home system operates today under a waiver of stringent federal Medicaid regulations that still govern the remaining large facilities.

The growth of the corporate provider system has also resulted in the creation of a largely hidden bureaucracy of highly paid executives of those nonprofit agencies. These executives have seen their own levels of compensation rise as the wages of direct-care staff have remained stagnant or failed to keep pace with inflation.

Due to the combination of poor oversight and and relatively low pay and training of direct-care staff, the privatized group-home system has for some time exhibited many of the warehouse-like characteristics of the former institutions prior to the 1980s. In addition to failing to address problems of abuse and neglect, the group-home system has not been able to provide promised openness and community integration. We hear about stories like Yianni’s all the time.

Yet, in Massachusetts, the private providers have established themselves as a powerful lobbying force on Beacon Hill and have essentially captured the system’s managerial and regulatory agency, DDS, which has continued to press for more and more privatization of services. The result today is a growing imbalance in state funding of DDS services. A priority has been placed by successive administrations and by the Legislature in Massachusetts on privatized care at the expense of state-run care.

In addition to worsening the problems of abuse and neglect, the funding imbalance has reduced the availability of state-run services as a choice to a growing number of people waiting for residential care and placements.

These issues need to be examined in a comprehensive way. That’s why we are calling for hearings by the Legislature’s Children, Families, and Persons with Disabilities Committee on problems with privatized care and what needs to be done to address them.

We’re urging people to call Rep. Khan (617-722-2011) or Senator Joan Lovely (617-722-1230), Senate chair of the Children and Families Committee, to ask the committee to schedule hearings on the privatized DDS group home system in Massachusetts.

DDS report faults provider and charges cover-up in near-fatal, group home food aspiration case

October 25, 2017 1 comment

(Update: The Essex County District Attorney’s Office confirmed this morning (October 26) that they have opened a criminal investigation into this matter.)

As The Salem News reported this morning (October 25), an investigation by the Department of Developmental Services of the near death of a developmentally disabled man who aspirated on a piece of cake in his group home concluded that seven employees of the private provider that operated the residence were at fault in the matter.

The scathing report, which is dated September 8, also stated that a high-level employee of the Beverly-based provider, Bass River, Inc., removed key records from the facility concerning the matter and instructed staff not to cooperate with the DDS investigation. The findings have reportedly led to a criminal investigation by the Essex County District Attorney’s Office.

The report was released by the Disabled Persons Protection Commission, an independent agency, which investigates abuse and neglect of disabled individuals, and which had referred the case to DDS to investigate.

In August, we first reported that the staff of the group home had failed to react for nearly a week after the 29-year-old man, Yianni Baglaneas, reportedly aspirated on a piece of birthday cake in the residence on April 9. He was admitted to Addison Gilbert Hospital in Gloucester in critical condition on April 15, and spent 11 days on a ventilator and a week in the Intensive Care Unit at Mass. General Hospital.

Aspirating or inhaling food into the lungs is a particularly serious danger among people with intellectual disabilities.

The DDS report did not identify the Bass River staff and other employees by name, but one of the individuals cited for abuse and neglect is believed to be the group home director, and another is the provider’s residential director who had authority over all of the agency’s group homes.

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

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

A group home staff member did bring Yianni to a nurse practitioner  at Cape Ann Medical Center in Gloucester on April 13, four days after he aspirated on the cake. The nurse practitioner diagnosed Yianni’s condition as bronchitis and an upper-respiratory infection. She performed a nebulizer treatment on him and prescribed cough syrup and Mucinex and Robitussin, which are over-the-counter decongestants.

According to the DDS report, the nurse practitioner stated to the staff member that Yianni should be brought back if his condition worsened, but that Yianni was never brought back to the medical center.

The DDS report charged that the group home staff, including the house director, committed mistreatment for failing to ensure that Yianni received the prescribed decongestant medications. And the report charged that the house director committed mistreatment in failing to follow up on recommendations of Yianni’s day program staff on April 14 that the staff seek medical attention for him because he appeared to be very ill.

Yianni’s mother, Anna Eves, said she believes criminal charges should be filed in the case in light of the DDS report. “It’s easy for them (the provider and key staff) to abuse and neglect people in the shadows, and this needs to be brought out into the light of day,” she wrote in an email. “I have felt physically ill since reading this report and reading the absolute disregard for my son’s well being. I cannot believe I ever trusted them at all.”

The DDS report did not address the issue of possible criminal charges, but did recommend that DDS re-evaluate the group home’s license to continue to operate.

Yianni was actually taken to Addison Gilbert Hospital on April 15 by his mother, who had not seen him during the previous week. She met him at a Special Olympics track practice in Gloucester to which he had been brought by a staff member of his group home.

According to the DDS report, Yianni’s Special Olympics track coach stated that Yianni appeared to be extremely lethargic, coughing and having difficulty breathing. Yet no one from the group home informed either the coach or Yianni’s mother that Yianni was seriously ill.

That group home staff member told the investigator that Yianni had been taken to the track practice because the group home was closing for the weekend, and it did not matter how sick he was.

We do not think Yianni’s case is unique in Massachusetts. This morning, I sent an email to the House chair and Senate vice chair of the Children, Families, and Persons with Disabilities Committee, renewing a call we have made for a hearing into issues surrounding oversight of privatized human services. We have called for such hearings by the committee in the past, to no avail.

Alleged obstruction of the investigation

The DDS report described a number of instances of apparent obstruction of the DDS investigation of Yianni’s case.

According to the report, the Bass River residential director acknowledged to the investigator that she removed documents from the group home before the investigator could see them. She also acknowledged to the investigator in an initial statement that she had directed staff in the group home not to cooperate with the investigation. She later changed that statement, according to the report.

One witness told the investigator that he heard the residential director say to a staff member  that “there will be consequences” if he cooperated with the investigation.

The report stated that records that could not be found or obtained by the investigator included daily and after-hours shift reports, emails from the time-frame in question, medication-related documents, Yianni’s ISP or care plan reports, and staffing schedules.

Failure to use the CPAP machine

According to the DDS report, Yianni has been diagnosed with sleep apnea, a potentially dangerous condition that is characterized by interrupted breathing during sleep.

The report concluded that seven employees of Bass River were negligent in failing to administer prescribed medication and to ensure that Yianni used his doctor-ordered CPAP machine, and that this failure directly contributed to his “serious, life-threatening medical condition.”  That failure “more likely than not caused Yianni to aspirate while eating or sleeping, directly causing the aspiration pneumonia,” the report stated.

In a 180-day period between October 2016 and April, Yianni only used the CPAP mask on 36 days, or 20 percent of the time, according to the report.

The medical expert told the DDS investigator that without the nightly use of the CPAP machine, Yianni’s breathing would stop while he was sleeping, his heart rate would rise, and his red blood cell count would drop to levels that could be life threatening. In addition, this situation would have affected Yianni’s brain function negatively during his waking hours, causing him to have difficulty chewing and swallowing food and to aspirate on it.

The medical expert determined that Yianni could have either aspirated on food or fluids built up in his throat due to not using the CPAP machine.  According to the expert, there is a direct link between sleep apnea and aspiration pneumonia when the apnea is not treated with a CPAP mask.

At least two Bass River employees stated that they were aware the staff were not making sure Yianni used the CPAP machine, but failed to do anything about it.

One staff member stated that on the night of April 9, when Yianni reportedly aspirated on the piece of cake, she had heard him wandering through the house, but she did not direct him back to bed. She also did not see to it that he was wearing the CPAP mask because she knew he would remove it, and therefore, she said, “‘I don’t bother.'”

The report stated that Yianni’s mother became aware that the CPAP machine was not being used based on an internal reporting chip in the machine. As a result, she emailed the Bass River residential director in March, requesting that the group staff make sure to use the machine each night.

The residential director at first told the DDS investigator that she was not aware that Yianni was not using the CPAP machine, but she did not deny that she received his mother’s email and acknowledged that she apparently neglected to follow up on the issue with the group home staff.

The house director acknowledged that she was contacted by an unidentified group home staff member that Yianni was not feeling well and was also told on April 14 by Yianni’s job coach that he appeared to be very ill that day, but she did not follow up with either of these notifications.

The house director also admitted that she falsely told Yianni’s mother on April 13 that Yianni was not ill, but only had allergies. She said that she misled Yianni’s mother about that because she had confused Yianni with another resident.

The report also stated that, according to the staff, the house director, was rarely present in the group home. She told the investigator that she was frequently out at the Bass River office and at meetings, but she was unable to list meetings that would have taken up that much of her time, according to the report.

The report stated that other troubling characteristics of the group home include the fact that none of the staff were scheduled to be awake at night even though Yianni, in particular, was known to wander around at night and to take food from the refrigerator.

In addition, staff who were trained in administering medications, stated that they were only part time and that it was not their responsibility to do so.

Today’s Salem News article noted that Yianni grew up in Rockport and “appeared to thrive and was well-known in the community.” The article stated that a 2005 story in The Gloucester Times described how he had obtained his first job, at Smith’s Hardware, “where he greeted customers with a firm handshake or high-five and sometimes, a hug.” He was later voted king of his high school prom.

As noted, Yianni’s case is not unique. Poor quality care is a serious problem throughout the DDS system, and Yianni’s case is further evidence of that. The Children and Families Committee needs to take the first step in bringing official scrutiny to this system and beginning to suggest needed improvements to it.

 

Developmentally disabled man nearly dies after group home fails to respond to severe food aspiration symptoms 

August 23, 2017 3 comments

Yianni Baglaneas, who has Down syndrome, had a great time at a Special Olympics bowling tournament in Peabody on April 9, the day after his 29th birthday.

But later that night in his group home, he apparently aspirated on a piece of birthday cake and nearly died of pneumonia almost a week later because the staff in the residence allegedly did not react to his constant coughing.

“It was like Yianni was drowning while surrounded by people, and  no one gave him a hand,” his mother, Anna Eves, said.

Aspirating or inhaling food into the lungs is a particularly serious danger among people with intellectual disabilities, and caretakers are normally trained to take measures to prevent it from happening and to recognize the symptoms when it does happen.

However, the staff of the group home in Peabody run by Bass River, Inc., a Beverly-based provider to the Department of Developmental Services, allegedly failed to take Yianni to a doctor for three days while his coughing continually got worse. In addition, a nurse practitioner at the Cape Ann Medical Center, who finally saw Yianni, apparently misdiagnosed his condition as bronchitis.

Yianni getting bowling medal

Yianni Baglaneas (center) at his Special Olympics bowling tournament on April 9. Hours later, he aspirated on a piece of cake in his group home.

The nurse practitioner prescribed cough and cold medicine for Yianni and sent him back to his group home.  She did not do a chest x-ray even though his blood oxygen level was low and his white blood cell count was high, indicating the presence of an infection due to the aspiration.

It was two days after the doctor’s office visit that Anna, who had  no idea of the seriousness of her son’s condition, saw him for the first time since the bowling tournament. She was so concerned about how ill he looked that she took  him to Addison Gilbert Hospital in Gloucester where he was immediately admitted in critical condition. That was on April 15, six days after he had apparently aspirated on the piece of cake.

No one from the group home had informed Anna or her husband of Yianni’s worsening condition during that week. The house director had only emailed Anna at one point that Yianni was being taken to the doctor with a cough and a runny nose, and later told her the doctor said her son was suffering from allergies.

“I will never forget the ICU doctor telling me he was in critical condition and asking me if I wanted him to do everything he could to save his life,” Anna said. A nurse told her that her son had been hours away from dying when he was admitted to the hospital.

COFAR emailed Larry Lusignan, executive director of Bass River, Inc., to ask whether he would comment on the case and whether his agency was taking steps to better train staff in how to recognize and react to symptoms of aspiration pneumonia and other illnesses among group home clients.

Lusignan declined to comment, stating in a reply email that “…issues of confidentiality prevent me from disclosing information of any kind regarding our service delivery to individuals, or even the identification of any individuals served.”

Anna said the episode has made her “distraught about the level of abuse and negligence that happens in group homes in Massachusetts.” She said she has begun looking for other parents “to join with to shine a spotlight on this and change things so that these things stop happening.”

COFAR has long sought a state investigation of group home conditions in Massachusetts – particularly in privatized group homes. Abuse and neglect in the DDS system is a topic that now and then appears on the political agenda, but rarely attracts sustained legislative attention.

In 2013, after The New York Times and The Hartford Courant both ran separate series on abuse and neglect in privatized group homes in their respective states, Senator Chris Murphy of Connecticut called for a federal investigation of deaths and injuries in privatized care. But Murphy later appeared to back off his call for a comprehensive federal review.

“The bottom fell out”

Anna Eves described her son as  a “sweetheart of a guy” and a beloved figure in his hometown of Rockport. He was so popular in high school that he was named the school’s prom king, and he attended graduation and received a standing ovation there even though he didn’t receive a diploma.

But the “bottom fell out” of his care after he turned 22, his mother says. That was when his eligibility for special education funding ended and he became eligible for DDS services.

For several years after turning 22, Yianni lived at home with his parents.  But even though he is nonverbal, he wanted independence and was lonely after most of his siblings moved away to start their lives, his mother said. He was excited when in June 2016, he moved into the DDS-funded group home operated by Bass River.

But after what happened in April, less than a year into his residence in the group home, his parents have taken him back home.

A timeline of inattention

Anna had to piece together what had happened to her son in April by talking to caregivers, doctors, and others. She filed a complaint with the Disabled Persons Protection Commission (DPPC) on April 17, and was still waiting as of today (August 23) for the results of the investigation of the matter. That investigation was actually referred by the DPPC to DDS.

Based on Anna’s account, we have pieced together the following timeline of events involving her son before and after he developed symptoms of apparent aspiration:

Saturday, April 8: Yianni’s 29th birthday. He spent most of the day with his parents.

Sunday, April 9: Yanni’s parents took him to a Special Olympics bowling tournament in Peabody. He showed no sign of illness. 

Back in his group home later that night, Yianni is believed to have aspirated on a piece of birthday cake, which he had gotten out of bed to eat. His roommate, who had made the cake, was concerned about him. 

Anna said her son has had a history of putting too much food in his mouth and not chewing it sufficiently before swallowing. She said the group home staff was aware of that. Yet, to his mother’s knowledge, no one in the group home was aware that he had gotten the cake out of the refrigerator that night.

Monday and Tuesday, April 10 and 11: Yianni was continually coughing in his group home. His roommate, who is verbal, was worried enough that he told his mother he thought Yianni was very sick and that it had been caused by the cake he had made. But no one from the group home apparently made that connection, took any action, or called Yianni’s parents.

Wednesday, April 12: Yianni was sent as usual to his day habilitation program in Beverly, run by EMARC, a DDS provider. He was coughing so much that the day program nurse sat with him at lunch because she was afraid he was going to choke on his food. The nurse reportedly later suggested to the Bass River group home staff that Yianni be taken to a doctor, but the nurse did not arrange for that herself.

Anna said the nurse later changed her story and told her Yianni had been coughing only moderately at his day program.

Thursday, April 13:  Anna received an email that morning from the group home director, stating that Yianni had woken up that morning not feeling well and that he was being taken to see a nurse practitioner at his doctor’s office that afternoon.

The email from the house director said that Yianni had congestion, a cough and “a bit of a runny nose,” so Anna was not overly concerned. The email did not indicate that Yianni’s coughing had been going on for days or that it was getting worse. It was the first time anyone in the group home had sent any message to Anna that week indicating that her son was not well.

The house director added that the medical appointment was at 1:30 p.m. and that she would update Anna with the results. A staff member did finally take Yianni to his primary care doctor’s office at the Cape Ann Medical Center in Gloucester.

Anna said she learned that the group home staff member told the nurse practitioner falsely that Yianni had started coughing only that day. The nurse practitioner took a blood sample, but did not do a chest x-ray.

According to Anna, the blood test showed a high white blood cell count consistent with an infection, and a potentially low blood oxygen level of 90. She said the blood oxygen level should be 99 or 100.

The nurse practitioner diagnosed Yianni’s condition as bronchitis and an upper-respiratory infection. She performed a nebulizer treatment on him and prescribed cough syrup and Mucinex and Robitussin, which are over-the-counter decongestants. Despite the results of the blood test and the low blood oxygen count, the nurse determined that Yianni could return to his residence.

Anna said she later learned that the group home staff had removed her name and phone number as her son’s primary medical contact and substituted the group home phone number without her permission even though she is her son’s legal guardian. As a result, no one at the medical center had any means of contacting her regarding her son.

That same afternoon, Anna said, the house director called her, but it was actually by accident. The director had meant to call Yianni’s roommate’s mother. But Anna pressed her during the phone call about her son’s doctor’s visit. The house director appeared to be rushed, she said, and told her only that her son had allergies.

Friday, April 14: The group home director took Yianni as usual to meet with his job training coach at Community Enterprises, Inc., a DDS provider, in Salem. The job coach later told Anna she was alarmed at how sick Yianni appeared. However, the job coach did not take any action or contact anyone about him at the time.

Saturday, April 15:  A group home staff member dropped Yianni off at a Special Olympics track practice in Gloucester. His parents were there to meet him, and it was the first time they had seen him since Sunday, April 9, the day after his birthday.

Anna said that when she first saw the group home staff member at the Special Olympics event, her son was in the bathroom. “She (the staff member) didn’t say anything,” Anna said. “She just handed my husband, James, his overnight bag and drove away.”  When her son emerged from the bathroom, Anna said, she and her husband were shocked at how ill he appeared. “He was coughing and his eyes were sunken,” she said. A Special Olympics coach approached her and said her son did not appear well enough to participate in the practice.

Anna took her son home and tried to give him lunch, but he wouldn’t eat. Then she looked into his overnight bag and saw the Mucinex for congestion. “I thought he just had allergies, but when I saw the Mucinex, I thought right away something was not right.”  At that point, Yianni appeared lethargic and didn’t want to move.

Anna thought about calling an ambulance, but then drove him to the emergency room at Addison Gilbert Hospital in Gloucester.  There, his blood oxygen was measured at 50, which is not compatible with long-term survival. His right lung was completely filled with fluid. He was admitted directly to the ICU in critical condition.

Monday, April 17: Yianni was placed on a ventilator on which he would remain for 11 days. Anna called the group home in the morning and left a voice message that Yianni was in the hospital ICU in critical condition on a ventilator with severe pneumonia.

Yianni in ICU

Yianni in the ICU at Addison Gilbert Hospital in Gloucester

Tuesday, April 18: The group home director returned Anna’s call from the previous day. “She said she heard Yianni was sick and was sorry to hear it,” Anna said.

Anna said she asked the house director why she had not informed her during the previous week that her son was sick and why she had told her falsely that he only had allergies. She said the director responded by saying she didn’t know why she had not told her the truth about the situation. She said the director then said to her, “’It’s all my fault.’”

Thursday April 20: Larry Lusignan, executive director of Bass River, Inc. called Anna “to ask what happened,” she said. She said she told him her son would not be returning to the group home and that she had made arrangements to pick up his belongings from the residence. She said Lusignan never acknowledged any wrongdoing.

Sunday, April 23: Yianni was moved from Addison Gilbert to the ICU at Mass General Hospital.

Sunday, April 30: Yianni was moved out of the ICU at Mass General and into the hospital’s Respiratory Acute Care Unit.

Anna said that Yianni spent about a week in the Respiratory Care Unit at Mass General and then spent about three weeks at Spaulding Rehabilitation Hospital. 

Thursday, May 25: Yianni was released from Spaulding Rehab and went home to his parents’ house in Rockport.

The ordeal is not over for Yianni. Anna said she was told it could take six months to a year for him to fully recover. His parents are not sure, in fact, that he will ever completely recover. Since his hospitalization, he has continued to need an inhaler and gets out of breath from walking. He needs to sleep at night with supplemental oxygen.

Anna is not sure what is next for her son or what type of residential care would be appropriate for him. “He’ll be home with us until I am 100 percent confident in any placement,” she said.

We think Yianni might be a good candidate for a state-operated group home in which the staff  is more highly trained than is largely the case in privatized residences. As we have noted, however, the administration appears to be phasing out state-operated residential options for people.

We hope this case will demonstrate the continuing need for state-run residential programs and that it will lead to better training of staff in all DDS residential facilities. Unfortunately, however, incidents like this seem to continue to happen with regularity in the DDS system.

We would also hope this case will finally spark a hearing by the Legislature’s Children, Families, and Persons with Disabilities Committee into issues surrounding oversight of privatized human services.

A gritty new book on a survivor of Belchertown State School

October 27, 2016 3 comments

Donald Vitkus spent his childhood years in the 1950’s at the Belchertown State School, one of the large institutions for people with developmental disabilities that used to be common in Massachusetts, but have now largely been shut down.

“You’ll Like it Here,” which is scheduled for publication on November 1 by Leveller’s Press of Amherst, MA, is the ironically titled story of Vitkus’s life, as told to Ed Orzechowski, a COFAR Board member and president of the Advocacy Network, an affiliated organization. A book signing is scheduled for Sunday, November 13, at 4 p.m. at the Florence Civic Center, 90 Park Street, in Florence, MA.

I had a chance to read an advance copy of the book.  It is an emotionally gripping account of the resiliency of the human spirit. The result of more than 40 hours of interviews, it is Vitkus’s recollection of growing up at Belchertown, how that experience shaped the rest of his life, and his “passionate desire that we never return to those days.”

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In 2005, Orzechowski was assisting at a book signing at Holyoke Community College for “Crimes Against Humanity,” a detailed account by Benjamin Ricci of conditions at Belchertown and the other institutions prior to the 1970’s. Ricci had been instrumental in bringing about a class action lawsuit in that decade that resulted in major improvements  in the care and conditions in the facilities.

Following that 2005 book signing, Orzechowski says, a member of the audience approached him.  It was Vitkus, then a 62-year-old student at HCC. Vitkus had actually been responsible for arranging Ricci’s talk.

Vitkus told Orzechowski he had grown up at Belchertown, and was looking for someone to help him write his life story. That conversation evolved into Orzechowski’s book.  Vitkus is now an advocate for people with developmental disabilities and is vice president of the Advocacy Network.

Vitkus was sent by a foster family to Belchertown in 1943, when he was six years old.  He had a tested IQ of 41 and was labled “a moron” in the state school records. But as you read this account, you realize just how faulty IQ tests can be.  In fact, Vitkus and many of his fellow “inmates” at Belchertown had to use their wits to survive there.

You may marvel, for instance, at the ingenuity Vitkus and a handful of other boys used in a number of instances to light cigarette butts they had found, using only an empty overhead light socket in a boys bathroom and a strand of steel wool.  Matches were forbidden.

As I read this story, I got the impression that there are actually two main characters in it. The primary character, of course, is Vitkus.  But I found myself viewing Belchertown as a character as well — it’s a brooding presence throughout the book.  Belchertown is the evil institution incarnate.  It is Vitkus’s triumph that he was able to survive Belchertown and get on with his life, and ultimately to help others in the largely privatized group-home system that has replaced the large institutions.

This is a gritty book, and a disturbing one. It is not for the faint of heart. Some of the incidents are mind-numbingly horrifying.

What Vitkus and so many others went through at Belchertown in the 1950’s was the result of an attitude at that time that people with intellectual disabilities were not only sub-human, but that horrendous things could be done to them without fear of retribution.  The residents were abused and treated as prison inmates by many of the staff. The place was overcrowded and unsanitary.

Beyond the abuse, there was an attitude at Belchertown at the time that few of the people living there had any potential to live outside of the institution, or any need to be treated with basic human dignity. For instance, the residents were not even allowed to receive Communion in Catholic services that they attended at Belchertown.

The only person who would receive Communion was the residing priest, Vitkus told Orzechowski, “who would give it to himself while we all watched. We were never allowed to receive, I guess because we never had confession. I think they figured us morons wouldn’t know when we were sinning, anyway.”

And yet, there were exceptions to the prevailing conditions and attitudes at Belchertown:  The actual school on the grounds was a haven for Vitkus.  Unlike most ward attendants, the teachers in the school were encouraging, he notes.

There were little satisfactions, such as the sudden appearance in Vitkus’s ward of a television set, which had been bought by members of the Belchertown Friends Association, a group formed by parents of patients. “Without them, we wouldn’t have known what television was. I wouldn’t have gotten to see the only World Series the Dodgers ever won in Brooklyn.”

TV also showed Vitkus news coverage about the civil rights struggles of the late 1950’s.  These images raised troubling questions for him. “Why were colored people treated like that?” he wondered.  “Why was anyone treated like that? Why did places like Little Rock, Montgomery, and Belchertown exist? Where was justice?”

There were occasional outings from Belchertown as well — to the Belchertown Fair and to Camp Chesterfield, a boy scout camp.

But Vitkus’s experiences at Belchertown were mostly hellish.  At one point, he began refusing to take mind-numbing Thorazine and bit off the finger of an attendant who was trying to jam the pills down his throat.  He spent 34 days in solitary confinement as a result.  “Lithium and Thorazine were chemical restraints used to supplement leather straps,” he states.

In 1960, Vitkus was “paroled” from Belchertown at the age of 17, after graduating from the sixth grade at the school. His IQ now tested at 80, and he was sent to a program run by the Catholic Church called Brightside. Conditions there were remarkably better than Belchertown had been. There was no one there to force meds down his throat, Vitkus notes.

But Vitkus was clearly smarter than his stated IQ. After he did leave Belchertown and was living on his own, he bought a set of the Encyclopedia Britannica from a salesman and proceeded to read it. But he was dogged by the state having classified him “as a moron.” His draft card read 4-F, which meant he was unsuitable for the military.

That 4-F classification was so offensive to him that he resolved to change it; so he went to the local draft board office and got it changed to 1-A.  He was eventually shipped off to Vietnam where he first served as a cook for the Army, then engaged in combat and lost his buddy who was killed in a firefight.  Combined with the experience of Belchertown, Vietnam resulted in continuing guilt feelings and posttraumatic stress disorder for him.

After his return from Vietnam, Vitkus got married to a young woman whom he’d met while he was a resident at Brightside.  They had two children, a boy and a girl.  He also took night classes at a local high school and received a high school diploma.

Yet the wounds inflicted by Belchertown were always still there, even in his marriage. He was incapable of affection with his wife and could not relate in basic ways to his kids, and they all resented it.  Eventually, his wife filed for divorce.

Vitkus  later reconnected with his son, Dave, who became a police officer in Northampton, and the two of them went on an exhaustive hunt together for information about Vitkus’s past.  They first went back to Belchertown, which was then in the final process in the early 1990’s of closing, and later to court houses across the state for information about Vitkus’s mother and family.  With the help of a probate court investigator, they eventually found two of Vitkus’s sisters and a brother, with whom he reunited.

At the age of 52, Vitkus remarried.  But his past still wouldn’t let him be.  When his son Dave applied for a sensitive federal job, Vitkus was questioned during the background check by FBI agents. The agents, who knew about Vitkus’s background, interrogated him regarding some unsolved crimes. It was another reminder that his past was still a part of who he was and who people perceived him to be.

Vitkus eventually lost his job due to the continuing decline of the manufacturing industry in western Massachusetts. But it was the beginning of a new career in caregiving to people with developmental disabilities. He earned an associates degree in human services at Holyoke Community College — his college education was funded by the company that had laid him off.  He began working in a group home and took on a difficult resident there in whom he recognized potential as well as some of his own character traits.

A lingering irony

For me, this book highlights a key irony in the history of Belchertown and the other facilities like it in Massachusetts. The irony lies in the aftermath of the class action lawsuit that Ben Ricci filed in the 1970’s with the help of Beryl Cohen, a Boston attorney, who was the 16th attorney Ricci had approached. The federal court case was overseen by U.S. District Court Judge Joseph Tauro, who required major improvements in care and conditions in the facilities.

While the state ultimately spent hundreds of millions of dollars to upgrade the institutions and the care provided in them, governors of Massachusetts began a major push starting in the 1990’s to close those same facilities and privatize their services.

The question remains whether the privatized group home system is a truly adequate replacement for the upgraded institutions.  As Orzechowski states at the end of the book, Vitkus:

…knows that abuse and neglect still exist in the system. Battles involving agencies like the Massachusetts Department of Developmental Services, privately contracted vendors, families, whistle blowers and advocates continue—often in court—across the United States.

Ultimately, “You’ll Like it Here” is an uplifting account of the life of a man who survived some of the worst experiences life has to offer. If you want to get a sense of what it was like, and what it took to survive, in large institutions before the intervention of people like Ben Ricci, Beryl Cohen, and Judge Tauro, you should read this book.