COFAR blog

[UPDATE TO YESTERDAY’S POST (BELOW): Cindy Alemesis was informed yesterday (August 30) that the ban on family contact with her intellectually disabled son Nick would be lifted as of today, at the end of a 14-day period specified by Nick’s group home provider and DDS co-guardian (see post below).

However, Cindy also said that in a phone call yesterday, the Incompass group home manager told her the ban on all contact could be re-imposed if Nick continues to display aggressive behaviors. Cindy believes Nick has been acting out because he may have been abused in the group home, and that he wants to leave it.

Cindy said she asked the group home manager whether the ban on family contact was actually a form of punishment of Nick. “I said to him, ‘so, as punishment, Nick loses his mom?’” Cindy said. “And he said, ‘well Nick has to learn.’”

In a text message to Cindy yesterday, the Incompass director of residential services, said Cindy will be allowed to visit Nick at the group home this Saturday. She will also be allowed one 10-minute phone call a day with Nick. But the Incompass director stated that the phone call would be terminated by staff, “if Nick begins displaying unsafe/inappropriate behaviors during the call.”]

Cindy Alemesis, who saved her intellectually disabled son Nick’s life in 2018, was subject to a ban on all contact with him for the past two weeks because Nick allegedly began behaving aggressively after her visits and phone calls.

The ban was imposed on August 17 by Incompass Human Services, a Department of Developmental Services (DDS) group home provider, and by a co-guardian of Nick, who is paid by DDS. The Department is, meanwhile, continuing an effort in probate court to remove Cindy as her son’s other co-guardian for reasons that have never been made clear.

Nick Alemesis and his mother Cindy

Cindy believes Nick acts aggressively because he doesn’t want to remain in his group home in Dracut, and may have been abused there. Cindy has reported at least two incidents of injury suffered by Nick in the Incompass residence.

Both Incompass staff and DDS have failed to report those injuries to the Disabled Persons Protection Commission (DPPC), as required by law.

Neither DDS Commissioner Jane Ryder nor Jean Phelps, the Incompass CEO, have responded to an email last week from COFAR raising concerns about the ban on contact and the alleged failure to report the injuries.

Similar to past bans on contact

The ban on family contact with Nick is similar to bans imposed in at least two other cases, which led to emotional pain and suffering for DDS clients and their families (see here and here).

As we noted in our email to Ryder and Phelps, cutting off family and social contact with DDS clients is an extreme measure that runs counter to their well being and rights under DDS regulations to support human dignity. Among those fundamental rights is the right to visit and be visited (115 CMR 5.04).

In Nick’s case, the ban on contact also follows from previous restrictions imposed by Donna Nolan, the DDS co-guardian, on Nick’s visits to his church and community.

Reason for latest ban on contact disputed

Records sent to us by Cindy show that Incompass has charged that Nick has engaged in “unsafe and self-injurious behaviors” after visits or phone calls from her and other family members.

In an Incompass document titled, “Human Rights Request for Approval of Restriction,” both Phelps and Nolan signed their approval on August 17 of a 14-day ban on all family communication and visitation with Nick as well as “access to social situations” for Nick. The document, which concerned both family visits to the group home and visits by Nick to Cindy’s home, left open the possibility of extending the ban indefinitely.

The document stated that after speaking with his mother by phone on August 9, Nick threw a phone and later a stone from his bedroom at staff, and refused to take his medications.The document alleged that Nick was taken that day to Lowell General Hospital where he exhibited similar aggressive behaviors after Cindy called him and then visited him there.

The Incompass restriction document, however, did not identify any statements or actions by Cindy or any family members that might have incited Nck to act out. Cindy contends Nick acts out because he does not want to live in the group home, or return to it when he is taken elsewhere.

We would echo Cindy’s concern that conditions in the residence itself may be causing his behaviors and injuries. We think the solution to the problem is to change his residential setting.

Text messages and statements from Nick indicate that he may be afraid of being hurt or injured by staff in the group home. Cindy said Nick has told her that staff have “hurt his head.” Cindy also forwarded a July 28 text message from Caitlyn Alekshun of Bridgewell Counseling Services indicating that there is uncertainty as to why Nick has been agitated and engaging in possibly self-injurious behaviors.

As discussed below, an earlier message from Alekshun to Nick’s service coordinator indicated that the group home staff were not providing timely information to her about the possible cause or causes of Nick’s behavior.

We haven’t seen any records that indicate that either Cindy or other family members have done or said anything to incite Nick to act out or injure himself. In a July 21 email, Nick’s DDS service coordinator wrote that he had “observed Nick become dysregulated. Staff report that it is like this every day.” That would appear to rule out Cindy as the sole, or even main cause of Nick’s behaviors.

However, the August 17 restriction document, signed by Phelps and Nolan, concluded that:

Due to these recent events and to Nicholas’ increasingly unsafe behavioral response to interactions with Cindy, both in person and by phone, it is proposed that Nicholas does not have any communication or contact with family members (including, but not limited to Cindy…) for a period of 14 days. This period of time will allow the program to work more effectively with Nicholas to keep him safe, unencumbered by external stimuli that may significantly impact his ability to regulate his emotions and subsequent behavior.

At the end of this initial 14-day period of no-family contact, the treatment team will revisit this restriction and assess whether continuing the practice is warranted for an additional 14-day period(s).

Staff not providing information to clinician

The restriction document did not make it clear how or why contact with Cindy or other family members would incite Nick to engage in aggressive behaviors. We think that without establishing a clear cause of those behaviors, Incompass has not made a case for restricting family contact.

Nick (right) and his pastor, the Rev. Keith Phemister, and Keith’s wife Gloria. Nick has been restricted at least twice this year from visiting his church.

In fact, records indicate that the group home staff have been uncooperative with at least one clinician seeking to determine the cause of Nick’s aggressive outbursts.

In response to the service coordinator’s July 21 email, Alekshun of Bridgewell wrote that she had requested “recent behavioral data from the residence a few times, but haven’t received anything more recent than May.” Such data, she wrote, might “help justify the need for an inpatient placement” for Nick at a hospital setting.

Failure to report injuries

We are also concerned that DDS and provider staff have failed to report potentially serious injuries that Nick suffered in the group home, as required by law. In the most recent case, Cindy said she was forced to report a head injury that Nick suffered on March 16 to the DPPC because the injury had not been reported by the staff.

Both the DDS Decision Letter and subsequent Action Plan resulting from the March 16 incident stated that the alleged abuser didn’t report the injury.

Cindy said the incident resulted in bleeding from Nick’s ear, which would classify the injury as a serious physical injury under DPPC regulations. Nick received emergency room treatment for the injury.

DDS declines full investigation

After Cindy reported Nick’s March 16 head injury, DDS apparently conducted a limited Administrative Review of the incident. Administrative Reviews do not meet DPPC standards for full investigations. The DDS Decision Letter, issued after the review was completed, acknowledged that a “regulatory investigation” had not been conducted.

Given, in particular, that the bleeding Nick suffered from his ear would classify the injury as serious under DPPC regulations, it would appear that either DPPC or DDS should have conducted a full investigation of the matter, and not an Administrative Review. The DDS Decision Letter did not explain why a full “regulatory investigation” was not done.

The DDS Decision Letter concluded that as a result of the limited review, there was insufficient evidence to conclude that Nick had been abused by a staff member, and that Nick had “acknowledged” his injury had been self-inflicted. However, the Decision Letter did not disclose who was interviewed by the investigator. Cindy said she was not interviewed, and it is not clear whether even Nick was interviewed, based on accounts in the Decision Letter and subsequent DDS Action Plan.

The Action Plan, in fact, stated that, “It was reported by the provider that (Nick) exhibited self-injurious behaviors (SIB) causing injury to himself and was restrained.” (my emphasis). This statement appears to imply that the DDS investigator may have relied on an account from the provider, possibly even from the alleged abuser, in concluding that Nick had injured himself.

Both the Decision Letter and Action Plan said only that “during the course of the investigation witness(es) were interviewed and relevant documents were reviewed.” There was no specificity as to which documents were reviewed, or which witness or witnesses were interviewed. In fact, it isn’t clear, based on the word “witness(es),” whether more than one person was actually interviewed.

DPPC regulations (118 CMR 5.02) require that in full investigations, the investigator interview the reporter of the injury — in this case, Cindy. Cindy said that never happened.

The regulations also require that the investigator provide an assessment of the “immediate protective services needs” of the alleged victim to prevent the risk of further harm. There was no indication in the Decision Letter or Action Plan that such an assessment was done in this case.

The Action Plan recommended only that Nick’s residential and day provider staff “create a communication log that documents such incidents so everyone is informed.”  There was no recommendation in the Action Plan relating to failure of the provider or DDS to report the injury to DPPC.

Similarly, DDS and DPPC declined to undertake an investigation of an incident in 2018 in which Nick contracted sepsis and spent eight months in a hospital because of the apparent negligence of staff in his group home. That incident was also not reported by the provider staff or by DDS to DPPC.

No response from DDS or Incompass

As noted, on August 25, I sent an email to both DDS Commissioner Ryder and to Phelps, the Incompass CEO, noting our concerns about the restriction on family contact and about reports of poor conditions and staff treatment of Nick that led him to state and text to his mother that he did not want to remain there. As such, I wrote, we are concerned the residence is potentially unsafe for Nick. To date, I haven’t received a response to my email.

We urge DDS and Incompass to reconsider the restrictions placed on family contact with Nick. We also urge DDS to conduct a full investigation of the injury that occurred to Nick on March 16, and to investigate the care and conditions in the residence.

Finally, we urge DDS to work with Cindy to identify another residential setting for Nick or a placement in an Intermediate Care Facility such as the Hogan Regional Center.