COFAR blog

The primary care doctor for the past eight years of a man with an intellectual disability is voicing opposition to a continuing effort by the state to remove the man’s mother as his co-guardian.

For more than a year, the Department of Developmental Services (DDS) has, for unclear reasons, been seeking the removal in probate court of Cindy Alemesis as co-guardian of her son Nick. That is despite the fact that Cindy appears to have saved her son’s life in 2018.

In a letter intended to be submitted to the probate court, Zaheer Ahmed, a doctor of internal medicine based in Lowell, said he has “witnessed how Cindy cares for Nicholas over the years.

“She (Cindy) is very active in his care, concerned for his well-being, makes sure he does not miss medical appointments, and has always acted in the best interest of her son,” Dr. Ahmed wrote in the letter, dated November 9. He added, “I am confident that removing Cindy as co-guardian of her son will not be in the best interest of Nicholas.”

Cindy was the first to notice how ill her son was in December 2018, and got him to a hospital for lifesaving treatment after his group home staff missed a critical medical appointment for him with Dr. Ahmed.

Nick, who is 29, has a mild intellectual disability, and was born with hydrocephalus, a condition in which there is excess spinal fluid in his brain. He has a shunt in his brain that drains the fluid.

Staff in Nick’s group home in Dracut failed to take him for a scheduled morning ultrasound appointment with Dr. Ahmed on December 19 of 2018. The ultrasound would likely have shown that Nick’s brain shunt was leaking spinal fluid into his stomach.

DDS’s only stated reason in its petition for Cindy’s removal, which was filed in October 2020, was that she had made decisions that were not in her son’s best interest. The Department’s petition did not say what those decisions were.

Nick and his mother, Cindy Alemesis

Eight months at Mass. General Hospital

In a previous letter, which Dr. Ahmed wrote following Nick’s hospitalization in 2018, he stated that he had examined Nick on December 17 of that year, two days before Nick fell ill.

During the December 17, 2018, visit, Dr. Ahmed scheduled an ultrasound of Nick’s abdomen for two days later — December 19 at 10 a.m. Dr. Ahmed’s letter added that, “the patient and care worker were both informed of (the) appointment before leaving the office on that date.”  However, Dr. Ahmed said Nick didn’t show up for the December 19 appointment, and the ultrasound had to be rescheduled for December 21.

However, Nick fell ill during a church service in the evening of December 19. During the ride back home in a church van, Cindy insisted that Nick be taken to Lowell General Hospital. There, doctors found that the shunt was leaking spinal fluid into his body. Cindy didn’t know at the time that the ultrasound appointment had been missed.

Nick got sepsis from the leaked fluid, and was transferred to Mass. General Hospital. He remained there for eight months during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Staff missed medical appointments

After Nick’s recovery and release from the hospital in July 2019, Cindy  regularly complained that staff in the group home, run by LifeLinks, a provider to DDS, were continuing to miss medical and dental appointments for him.

In his November 9 letter in the case, Dr. Ahmed stated that “Nicholas has missed doctors appointments. Cindy notices the missed appointments and advocates for her son.”

Cindy filed a complaint in October 2020 with the Disabled Persons Protection Commisson (DPPC), alleging that the group home was continuing to miss medical appoints for her son. But DPPC screened out that complaint as ineligible for an abuse investigation, and instead referred it to DDS for an “administrative review.”

The DPPC intake form stated that Cindy’s complaint was screened out because Nick had not suffered a serious physical or emotional injury. However, that same DPPC intake report acknowledged that one of the alleged missed appointments had led to Nick’s hospitalization for eight months.

Cindy said that during the past year, her contact with her son has remained sharply restricted by DDS and the provider.

DDS guardianship removal petition raises question of retaliation

In 2019, Cindy had sought to remove the other appointed co-guardian for Nick. That co-guardian is paid by DDS, according to DDS records. Cindy maintains that the other co-guardian has been uninvolved in Nick’s care and lives in Florda. Cindy’s effort in court to remove the other co-guardian was unsuccessful.

That previous court battle, however, raises a question whether the current effort by DDS to remove Cindy as co-guardian is being done in retaliation.

A pre-trial conference in the case has been scheduled for December 15 by Probate Court Judge Melanie Gargas.

We are continuing to advocate on behalf of Cindy, and we intend to join with Dr. Ahmed in stating to Judge Gargas that Cindy has always acted in her son’s best interest and should not be removed as his co-guardian.

As we have noted in the past, this case fits a pattern in which DDS and providers have taken a variety of punitive and retaliatory actions against family members and guardians when they are seen as troublesome or meddlesome in advocating for adequate care for their loved ones in the system.

It is unfortunate that DDS has dragged out this case as long as it has. The Department’s effort to remove Cindy as her son’s guardian and the restrictions placed on her contact with her son have placed unimaginable stress on her. Those restrictions have also hampered Cindy’s efforts to advocate for the best possible care for Nick.

We urge DDS to drop its effort to push Cindy out of her son’s life, and to begin to work with Cindy to rectify the problems she has identified with her son’s care in his group home.