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

(Cross-posted from The COFAR Blogsite)

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.

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.

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.