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

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 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.

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.