COFAR blog

Rosemary and Wilfred Dumont were sure there was something seriously wrong with their son Stephen, 37, who lives in a state-operated group home in Spencer.

In their view, he was having trouble breathing.

But the licensed practical nurse in the residence, who is employed by the Department of Developmental Services (DDS), maintained there was nothing the matter with him.

Stephen has an intellectual disability and is deaf. But while he can communicate using sign language, Rosemary said he will not communicate that he is sick because he is afraid of going to the hospital.

On January 18, 2020, Stephen had come home for the weekend not feeling well. As the DDS investigative report on the case stated, Rosemary noticed his apparent breathing problem.

Rosemary Dumont, Stephen (center), and Will Dumont, while Stephen was still at the former Glavin Regional Center in 2011. The Dumonts maintain that the care Stephen has received in the community-based group home system has not been as good as it was at Glavin. Glavin was closed in 2013.

The following Monday, Rosemary texted the nurse, saying, “It looks like he is having a hard time catching his breath. We noticed it last weekend as well…” Rosemary requested that Stephen be given a nebulizer treatment in his group home before going to bed.

According to the DDS report, the nurse responded that Stephen’s lungs sounded clear and that he was not coughing or wheezing. The nurse and another staff member determined a nebulizer wasn’t necessary.

But Rosemary was still concerned. On Thursday of that week, she texted the nurse a video she had taken of Stephen. In her opinion, it showed him struggling to breathe. But the nurse again responded that she didn’t think Stephen was having any breathing difficulty, although she suggested that Rosemary could call Stephen’s doctor, according to the state report.

On Saturday, January 25 — a week after Rosemary first reported Stephen’s breathing problem — Stephen went home for another weekend visit. As far as Rosemary was concerned, he was no better than he had been the Saturday before. The following day — Sunday — Rosemary texted the nurse and a number of other staff at the group home another video of Stephen.

That video shows Stephen seated and looking uncomfortable. In it, he shifts in his seat as if he might be in pain; his mouth is open, and his eyes look glazed.

But the nurse was still not concerned. She responded in a text message that due to background noise in the video — apparently from a TV — she could not hear Stephen’s breathing. But, she added,  “We walked him yesterday morning. No shortness of breath or wheezing.”

Rosemary texted back to the nurse. “Watch the way he is breathing,” she stated. “He is like glopping for air. No wheezing or any sound. Just glopping for air. I’ve never seen it before. Like when he was a baby on a respirator it is worse when he wakes up.”

The nurse responded only that “he has appt tomorrow morning with neuro.”

Rosemary said the nurse all along had the capability of easily measuring Stephen’s blood oxygen level with a pulse oximeter, a device that clips onto a finger. But the nurse apparently did not measure Stephen’s oxygen level until Monday January 27.

Rosemary said that after Stephen was brought back to the group home on that Monday morning, she visited the residence and noticed that he looked ill. This time, she insisted that the nurse measure his blood oxygen level, and the nurse finally did so. The reading was 74, which was dangerously low.

The nurse at that point did call 911, and Stephen was taken by ambulance to a local hospital. “We almost lost him,” Rosemary said. He was diagnosed with aspiration pneumonia and was intubated for five days. He remained in the hospital for two weeks.

But even his first day in the hospital contained a jarring moment of anxiety for Rosemary and Will. A doctor had inexplicably issued a Do Not Resuscitate order for Stephen without their consent. Had Will not discovered the order and objected to it, Stephen would not have been intubated and would likely have died.

And while Stephen did recover fairly quickly from the pneumonia while he was in the hospital, he had to be returned to the hospital as many as three times in subsequent months with intestinal blockages stemming from the pneumonia. His lungs are now compromised, Rosemary said.

DDS finds insufficient evidence of neglect

After an investigation, DDS determined there was insufficient evidence to substantiate any charges of abuse or neglect on the part of the nurse or group home staff. A departmental “action plan” stated only that Stephen’s care giving team should “consider taking measures so that any concerns regarding (Stephen) are effectively communicated and the necessary support/services can be provided…”

Untreated groin infection

Rosemary said that during the same period in which he was struggling with aspiration pneumonia, Stephen developed a groin infection that the nurse also failed to treat. The infection turned into an open wound, she said, that lasted for the next year and a half.

“Now, I don’t let them (he group home staff) do anything on their own involving his (Stephen’s)  medical care,” Rosemary said. “I make all the doctors appointments.” She said she now also consults with a team of doctors for Stephen who are responsive to his condition and listen to her concerns.

Care was better at Glavin

Rosemary and Will maintain that Stephen’s overall care has never been as good as it was when he was a resident of the former Glavin Regional Center in Shrewsbury, a state-run Intermediate Care Center (ICF) that adhered to strict federal staffing and treatment standards. Glavin was one of four ICFs closed by the then Patrick administration between 2012 and 2015.

Rosemary and Will were among the Glavin families with whom COFAR fought unsuccessfully a decade ago to keep the Center open. Like all ICFs, Glavin provided residential, medical, clinical, and all other services needed by the clients on its campus.

Similarity to other cases 

Stephen Dumont’s case is at least the fourth such case we’ve recently written about in which a family member has noticed symptoms of aspiration pneumonia or other serious medical problems involving their loved ones in group homes in the DDS system. In each of those cases, DDS clinical and other staff failed to recognize a problem, thus placing the lives of the clients in jeopardy.

The Disabled Persons Protection Commission (DPPC) and DDS have been inconsistent in determining abuse or neglect in these cases.

Nick’s case

In a case we wrote about late last year, staff in a corporate provider-run group home in Dracut failed to take Nick Alemesis, a resident of the home, for a scheduled morning ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

Just hours after the scheduled time for the appointment, Nick’s mother, Cindy, first noticed how ill Nick appeared. She had him taken to a hospital where doctors found that the shunt was leaking spinal fluid into his body.

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

DDS and DPPC declined to undertake an investigation in that case. DDS has even subsequently moved in probate court for unclear reasons to remove Cindy as co-guardian of her son.

Maria’s case

In a case we blogged about just over a year ago, Michael Person found his daughter, Maria, unresponsive and breathing shallowly in her provider-run group home, surrounded by staff who were unaware of the problem.

Michael, who knew immediately that Maria’s life was in danger, rushed her to his own home where he keeps a tank of oxygen for her. Maria was then transported to Boston Children’s Hospital and placed on life support in the Intensive Care Unit for 14 days. She remained in the hospital for a total of 27 days.

The DPPC investigation in that case also failed to substantiate abuse or neglect.

Yianni’s case

In yet another case, Anna Eves recognized her son, Yianni, was unable to breathe normally after the staff in his provider-run group home had let his condition deteriorate for a week. Anna finally took him herself to the emergency room of a local hospital in Gloucester.  There, his blood oxygen was measured at 50, which is not compatible with long-term survival.

Yianni was admitted directly to the hospital ICU in critical condition and placed on a ventilator on which he would remain for 11 days. He then spent about a week in the Respiratory Care Unit at Mass General Hospital and subsequently spent about three weeks at Spaulding Rehabilitation Hospital. 

In that case, DDS did substantiate several instances of abuse, although none of the substantiations appeared to relate directly to the failure of the group home staff to seek medical care for Yianni in a timely manner.

Please urge support for H.1733

All of these cases demonstrate how important family members are in ensuring adequate care and safety of their loved ones in the DDS system. That is one of the reasons we are advocating for a perennial bill in the state Legislature (H.1733) that would require that probate court judges consider parents of individuals in the DDS system to be suitable guardians for them.

In too many instances, DDS officials, clinicians, providers, and probate judges dismiss families as uninformed or meddlesome. But as Rosemary, Will, Michael, Anna, and Cindy have shown, it is family members who not only have their loved ones’ best interest at heart, they are often the ones most clued in to their physical and emotional conditions.

Increasingly, as ICFs have been closed in the state and more and more services have been privatized, families have become the last line of defense in the care of their loved ones.

Please call the Legislature’s Judiciary Committee and urge the Committee to finally approve H.1773. You can reach the office of Senator James Eldridge, Senate chair of the Committee, at (617) 722-1120; and Representative Michael Day, House chair, at (617) 722-2396.

Tell the Committee staff that this bill is needed to ensure that families have the basic right to a say in the care of their loved ones in the DDS system.