COFAR blog

The Department of Developmental Services has offered to drop a two-year-long effort in probate court to remove Cindy Alemesis as co-guardian of her son Nick, whose life she saved in 2018.

But Cindy said that as part of a proposal made last week to settle the case, the Department stated that all medical and residential decision making authority concerning her son would be given to a new DDS-paid co-guardian.

In an interview, Cindy said she is encouraged that the Department is at least now open to her remaining as Nick’s co-guardian. However, she said, she will not accept an arrangement under which she would lose all medical and residential decision making authority in Nick’s care.

“I’m not handing that to them,” Cindy said. “I’ve fought for proper care for Nick and for his rights for his entire life.”

Nick and Cindy Alemesis

In 2018, Nick nearly died after staff in his group home in Dracut failed to take him for a scheduled ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

A few hours later, Cindy was the first to notice that Nick was ill, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that Nick had developed sepsis from it.

Nick spent eight months at Mass. General Hospital, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Despite Cindy’s actions in 2018, DDS petitioned the Middlesex County Probate Court for unspecified reasons in October 2020 to remove Cindy as Nick’s co-guardian.

Co-guardianship could still be “suspended” for vague reasons

The new DDS proposal last week to drop the effort to remove Cindy’s co-guardianship also includes a condition that her co-guardianship could still be “suspended” if she was found to be “unwilling to make (Nick’s) health and welfare the ultimate goal of (her) co-guardianship.” The proposal doesn’t explain who would make that determination or how it would be made.

The proposal further states that the DDS co-guardian would have to agree to “the dissemination of protected health information or other personal information about (Nick) with third parties uninvolved with (his) medical care.”

That condition sounds like an effort to prevent Cindy from providing information about Nick’s care or services to an organization such as COFAR. Presumably, if an incident such as a leaking shunt were to happen again to Nick, Cindy would be prohibited, under DDS’s proposed agreement, from saying anything publicly about the matter unless the DDS co-guardian were to allow it.

Cindy alleges poor care and decision making by DDS and provider

Cindy maintained that since Nick’s 2018 hospitalization, DDS and Nick’s residential provider, Incompass Human Services, continued to make poor decisions in providing medical care and services to him. She noted that DDS recently sent Nick back to a day program operated by Incompass, causing Nick to act aggressively and apparently injure himself.

Cindy said that in recent months, Nick was repeatedly injured in the group home, and was afraid of the staff there. The same thing then happened in the day program, she said, because many of the staff were the same.

Following those repeated injuries, Nick was moved out of the group home in September, and is currently living in a respite facility in Saugus.

Cindy said Nick’s former DDS-paid co-guardan, who had imposed a temporary ban this summer on Cindy’s visits and phone contact with Nick, has resigned. But Cindy said she isn’t hopeful the situation will improve with the appointment of a new DDS co-guardian.

The new DDS co-guardianship proposal contains the following stipulations:

• Eva Toscano, who appears to be a program manager with the Department of Mental Health, would be appointed Nick’s new DDS-paid co-guardian. Toscano would have sole medical and residential decision making authority regarding Nick’s care.
• Cindy would be informed beforehand of Toscano’s residential decisions “when feasible,” and would be informed beforehand of Toscano’s medical decisions unless there was an emergency.

It would appear that under this stipulaton, Nick could be moved from one residence to another without Cindy being informed in advance. In all cases, he could be moved without her consent.

• Cindy would have to give 48 hours notice to residential staff prior to visiting her son.
• Cindy would be allowed phone calls with Nick, but only if it were determined to be “not detrimental to (Nick’s) behavior.”

The proposal doesn’t specify who would make that determination as to whether the phone calls were detrimental, but it would appear to be up to the DDS co-guardian. Cindy says Nick has acted out in the past because he objects to a rule cutting off his conversations after 10 minutes.

• Cindy could continue to take Nick to his church, which he has attended for the past 25 years, but the DDS co-guardian could cut off the visits if she decided they were “detrimental to (Nick’s) behavior or health.”

Cindy would not be allowed to make that determination whether attending church was detrimental to Nick.

Both Cindy and Nick’s pastor, the Reverend Keith Phemister, have stated that Nick has never caused problems in his church. Yet Cindy said Nick has been restricted for months by DDS and by providers from attending church services and functions, even online.

In an interview in April, Phemister sad Nick had not been able to attend the church for the past month. “I know he looks forward to coming to church,” he said. It’s his lifeline.”

• Cindy’s co-guardianship could be “suspended” if she was found to be “unwilling to make (Nick’s) health and welfare the ultimate goal of (her) co-guardianship.”

It seems to us that stipulating that a guardian can no longer make residential or medical decisions or give out medical information about their ward essentially amounts to removing their guardianship. At the very least, DDS’s proposed resolution of this case would ensure continuing disputes between Cindy and the DDS co-guardian. We fully understand why Cindy does not want to accept a proposal like that.

In November 2021, Dr. Zaheer Ahmed, Nick’s primary care physician, wrote a letter to the probate court, opposing DDS’s bid to remove Cindy as Nick’s co-guardian.  In his letter, Ahmed maintained that Cindy had always acted in Nick’s best interest.

We agree with Dr. Ahmed, and believe Cindy should keep her medical and residential decision making authority.