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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.

Parents continually frustrated by DDS and group-home provider in advocating for adequate care for their son

January 9, 2018 1 comment

Ryan Tilly, who has Down Syndrome, had been living in his provider-operated group home in Haverhill for only four months in March of 2016 when he was allegedly assaulted by a staff member of the residence.

It was only the beginning of what would turn out to be a nightmare for Ryan, who turns 24 this month, and for his parents, Deborah and Brian.

The Tillys maintain that in addition to the assault, Ryan was subjected to neglect in the group home, which is operated by the NEEDS Center, a Department of Developmental Services provider.  He was also harassed by another resident of the group home so severely in 2016 that he has continued to isolate himself in his room there and was afraid for a period of time to take showers in the residence.

Ryan Tilly photo

Ryan Tilly

Yet, rather than working with the family to address those problems, both NEEDS and DDS initially turned against the parents, according to the Tillys and to documents in the case. The Tillys were accused of being “volatile and unpredictable,” and of fabricating a charge that the staff was failing to clean clothing that Ryan had soiled.

Ryan’s father, Brian, was banned for months from visiting Ryan in the NEEDS residence, while Deborah had to make appointments in order be able to see him.

A DDS investigation of the Tillys’ charge regarding Ryan’s clothing determined that there wasn’t sufficient evidence to charge the group home with neglect in the matter; but the report did not refute the parents’ allegations.  In September 2016, DDS recommended that NEEDS and DDS meet regularly with the Tillys to “foster cooperation,” and that DDS explore possible new residential options for Ryan.

Deb Tilly photo

Deborah Tilly

But neither NEEDS nor DDS appear to have fostered that communication, at least initially. The restrictions against the Tillys on visiting Ryan in the group home continued through at least October of 2016, according to emails from the provider.

In response to an email query from COFAR last week, Jim Sperry, NEEDS President and CEO, declined to comment on the overall case.

While the Tillys ultimately filed three abuse complaints against NEEDS involving their treatment of Ryan, DDS consistently maintained that there was a lack of evidence to support the complaints. Yet it appears that DDS failed to interview key witnesses in at least two of those cases.

In the assault case, the DDS report disclosed that the investigator never interviewed a witness who had also originally reported the incident. In the neglect case, DDS also found a lack of evidence to support the charge, yet never interviewed Deborah herself.

We have seen that dynamic many times in which parents and other family members have raised issues or made allegations about care; but rather than thoroughly investigating those allegations, DDS has turned against the family members and branded them as volatile or overly emotional.  In those cases, family members are made by DDS and its providers to feel as though they are to blame for the providers’ own failures in care.

For the Tillys, things began to improve only after they hired a lawyer to press their case to improve their son’s care and to overturn the restrictions on visiting Ryan. Their attorney, Thomas J. Frain, is COFAR’s Board president.

Nevertheless, the situation remains unpredictable, Deborah said, and the improvements could be reversed at any time. The Tillys have requested another residential placement for Ryan, including a possible state-operated residence, but DDS has so far not found one for him.

“We had to fight for Ryan’s rights to have us visit him at his residence without the restrictions the NEEDS and DDS placed on us, especially on his father,” Deborah said in an email to us. “We also had to get counsel to insure that the abuse, and neglect Ryan was subject to ended.”

Deborah’s email added that, “We as his parents know our son and can read his behaviors and actions very well….(Yet) the district DDS office continued to side with the providers, leaving parents and guardians fighting to keep their loved ones safe and cared for with dignity.”

Abuse neglect issues: 3 major cases

The following are details about the three complaints filed by the Tillys, based on interviews and documents provided by Deborah.  A NEEDS meeting minutes document from that period of time referred to a staff shortage in Ryan’s group home and to “a good deal of turnover” there.

Alleged assault by staff member

Deborah said Ryan had been living at the NEEDS residence for four months when Sperry, the NEEDS president and CEO, called her on March 31, 2016, to inform her that a report had been filed by an anonymous person to the Disabled Persons Protection Commission (DPPC) about an alleged assault on Ryan by a staff member. 

The alleged assault had actually occurred on March 17, two weeks earlier, while Ryan was being directed to a van to take staff and residents to a weekly community-based dinner. Ryan, who did not enjoy going on these outings, hit a female staff in the face when she got close to him. He was already agitated because of a previous dental appointment and because the staff member would not let him enter the home after the dental visit, but instead directed him to the van.

Deborah said that Ryan should not be seated near anyone within striking distance while riding in a vehicle. “He becomes very anxious and will hit those who are too close,” she said. This particular day, a male staff had seated another individual very close to Ryan. The female staff member whom Ryan had just hit, reminded the male staff that Ryan needed to sit by himself due to anxiety.

The male staff moved the individual, but the staff member himself sat next to Ryan even though there was room for him to sit elsewhere. Ryan struck the male staff and the male staff became angry. According to Deborah, a witness who was in the van said the male staff stood in front of Ryan and then punched Ryan in the face. The witness reported that Ryan had a swollen lip and a black right eye.

Deborah, who talked to the witness, said the witness had intended to report the incident the next day to the group home manager when she overheard the manager tell the male staff that he needed to “cover his tracks” in regards to a report about a prior incident the week before with a different victim. The witness decided not to talk to the manager at that time, and reported it instead to the DPPC, which referred the investigation to DDS.

According to the DDS report of the incident, staff and supervisors at NEEDS stated that they never saw any visible injuries on Ryan. Yet, at the same time, the report stated that a witness said Ryan suffered a black eye and swollen lip, and that the alleged abuser later stated that Ryan “had given himself a black eye.”

The DDS report also described the witness to the alleged assault as having “thought she saw ALAB (the alleged abuser) hit ALV (the alleged victim, Ryan).”

Despite that assertion, the DDS report stated that the reporter of the incident was never contacted because he or she was anonymous.

Deborah, who interviewed the witness herself, said the witness was the same person who reported the incident to the DPPC. If that is the case, it is unclear how the DDS investigator could seemingly identify this witness and report what she thought she saw, yet not contact her for an interview because the reporter was supposedly anonymous. 

“The NEEDS administration knew who the reporter was, as I gave them the information,” Deborah said. “DDS also knew who she was because I gave the information to Ryan’s (DDS) service coordinator. So the investigation was one-sided since the only people who were interviewed were the (remaining) staff from NEEDS.”

Although the assault allegedly took place on March 17, 2016, Deborah and her husband were not informed of it until March 31.  In an April 10, 2016, email to Sperry, Deborah wrote: “We have entrusted NEEDS and NEEDS staff to take care of our son in our absence. If we are not being informed about injuries, how can we trust those who are with him on a daily basis?”

 In an email response the next day, Sperry maintained that he had not been informed of the assault allegation until March 31. He stated that his agency had “interviewed all staff” who had worked during the time in question and none of them had said they observed an assault or that Ryan had a black eye. Yet, Deborah said Sperry had told her in a phone call that Ryan’s day program staff had reported the black eye.

Sperry added that if the abuse complaint was substantiated by DDS, the alleged abuser would be terminated, and that he would be transferred to another group home even if the alleged abuse was not substantiated. The alleged abuser was reportedly terminated by the provider even though the abuse allegation was not substantiated by DDS.

Alleged neglect

Deborah said that on June 13, 2016, she reported neglect charges against the NEEDS staff to the DPPC because of disturbing changes in his behavior when he came home every other weekend for visits.

She said that during the months leading up to that point, she had noticed that Ryan was afraid to use the shower at his home. He was also urinating and defecating in his room, in his clothing, and in his closet. There were several incidences where Deborah was finding soiled clothing at the residential home in his bureau.

Deborah sad she made several unannounced visits to the group home and found many times he had clothing rolled up in his laundry basket full of feces. Each time, she said, she alerted staff about those problems and followed up with emails to the NEEDS CEO, supervisor and house manager as well as the DDS service coordinator.

While plans were put into place to deal with the situation, the plans were not being followed by the staff, Deborah said. Things came to a head one weekend when Ryan came home smelling of body odor and very dirty. He refused to take a shower claiming he was afraid to go in the bathroom. “This is a young man who would take two showers a day and enjoyed being clean,” she said.

Deborah and her husband took him back to the group home on June 12, 2016. “We were very agitated and wanted to get to the bottom of the issue, and Brian at one point used profanity in suggesting that the “place should be closed down.”

Following the contentious meeting with the house manager, Deborah said, “they began accusing me of bringing the dirty feces into the NEEDS residences. Those accusations were outrageous and I had no alternative but to file abuse and neglect charges.”

However, a July 25, 2016, DDS decision letter found insufficient evidence to support the Tillys’ allegations of neglect, and stated that Sperry claimed Ryan was not exhibiting those behaviors at the group home and that he claimed the parents “are very volatile and unpredictable.”

Deborah said she was never contacted by the DDS investigator.  But despite the lack of substantiation of the neglect charge, a DDS action plan called for regular meetings between the Tillys and the NEEDS staff “to foster communication” and to “address any areas of concern that may arise.”

Unexplained head injury

Deborah said Ryan’s NEEDS Center day staff supervisor phoned her on September 29, 2016, to let her know that Ryan had a self injurious episode three days before in which he suffered a laceration on his forehead. She said the supervisor said he was concerned that Ryan might need medical attention to the injury because he believed it was infected.

Deborah said the day staff supervisor could not explain why no one from the day program nor the residential program had notified her of the injury at the time it happened.

On November 15, 2016, Deborah filed a complaint with DDS about the injury and the apparent failure of staff to treat it.  On July 21, 2017,the investigation was concluded. Again the charges came back as not substantiated. The only recommendation from the investigator was for NEEDS staff to report any injury to the parents/guardians on the date they occur.

Restrictions imposed on visitation. Family hires lawyer.

Deborah said that after she and Brian held the contentious meeting on June 12, 2016, with the NEEDS house manager over the staff’s alleged failure to clean Ryan’s soiled clothing, both NEEDS and DDS imposed severe visitation restrictions on the Tillys.

Brian was banned from the residence entirely and told that if he showed up at the house, the staff would call the police and that he would be arrested for trespassing. Although a DDS official stated that the ban would last 30 days, it actually lasted for months, Deborah said.

Deborah said that during that time, she was told she would need to make appointments to go to the house to visit Ryan.

Emails in October of 2016 from a group home staff member stated that Brian was still banned from the residence as of that time. On October 12, Deborah asked for clarification of the restriction because Brian had constructed a new bed for Ryan to replace one that was broken, and there was apparently no one else able to put the new bed together in the residence. No such clarification was forthcoming.

The visitation restrictions were lifted only after the Tillys hired Frain as their attorney.

Improvements and continuing issues 

As a result of the legal intervention in the case, there have been notable improvements in Ryan’s care, Deborah said.  Ryan now regularly sees a psychologist and has a clinical team. The team has started a program to address Ryan’s isolation and to control his behavioral issues with medication.

The staff at the residence has changed and are more open with Deborah about the events in Ryan’s day, she said. Ryan’s behaviors have improved dramatically to the point where his behavioral issues have almost disappeared. “We feel we brought to light the many injustices Ryan was subjected to,” Deborah said. “Things have improved but we still have a wary eye on them.”

Things still happen every now and then, she said. She still occasionally finds dirty clothing in Ryan’s room, and the staff still never seem to fully explain it.

Ryan is still afraid of the resident who had been harassing him and is still reluctant to leave his room.  He now must be sedated just to go to the doctor or dentist, and he requires two staff to bring him.

Deborah said she continues to be in daily contact with her son and will often visit unannounced.

Case should be considered by Children and Families Committee

This is one of the cases that we hope the Legislature’s Children, Families, and Persons with Disabilities Committee looks into.  The committee has scheduled an oversight hearing on the DDS system for January 17 at 1:30 p.m. at the State House in Boston.

A careful review of this case and DDS’s handling of it should provide much valuable information as to how DDS’s policies and procedures might be improved.