(Cross-posted from The COFAR Blogsite)
Yianni Baglaneas, who has Down syndrome, had a great time at a Special Olympics bowling tournament in Peabody on April 9, the day after his 29th birthday.
But later that night in his group home, he apparently aspirated on a piece of birthday cake and nearly died of pneumonia almost a week later because the staff in the residence allegedly did not react to his constant coughing.
“It was like Yianni was drowning while surrounded by people, and no one gave him a hand,” his mother, Anna Eves, said.
Aspirating or inhaling food into the lungs is a particularly serious danger among people with intellectual disabilities, and caretakers are normally trained to take measures to prevent it from happening and to recognize the symptoms when it does happen.
However, the staff of the Beverly-based group home run by Bass River, Inc., a Department of Developmental Services provider, allegedly failed to take Yianni to a doctor for three days while his coughing continually got worse. In addition, a nurse practitioner at the Cape Ann Medical Center, who finally saw Yianni, apparently misdiagnosed his condition as bronchitis.
Yianni Baglaneas (center) at his Special Olympics bowling tournament on April 9. Hours later, he aspirated on a piece of cake in his group home.
The nurse practitioner prescribed cough and cold medicine for Yianni and sent him back to his group home. She did not do a chest x-ray even though his blood oxygen level was low and his white blood cell count was high, indicating the presence of an infection due to the aspiration.
It was two days after the doctor’s office visit that Anna, who had no idea of the seriousness of her son’s condition, saw him for the first time since the bowling tournament. She was so concerned about how ill he looked that she took him to Addison Gilbert Hospital in Gloucester where he was immediately admitted in critical condition. That was on April 15, six days after he had apparently aspirated on the piece of cake.
No one from the group home had informed Anna or her husband of Yianni’s worsening condition during that week. The house director had only emailed Anna at one point that Yianni was being taken to the doctor with a cough and a runny nose, and later told her the doctor said her son was suffering from allergies.
“I will never forget the ICU doctor telling me he was in critical condition and asking me if I wanted him to do everything he could to save his life,” Anna said. A nurse told her that her son had been hours away from dying when he was admitted to the hospital.
COFAR emailed Larry Lusignan, executive director of Bass River, Inc., to ask whether he would comment on the case and whether his agency was taking steps to better train staff in how to recognize and react to symptoms of aspiration pneumonia and other illnesses among group home clients.
Lusignan declined to comment, stating in a reply email that “…issues of confidentiality prevent me from disclosing information of any kind regarding our service delivery to individuals, or even the identification of any individuals served.”
Anna said the episode has made her “distraught about the level of abuse and negligence that happens in group homes in Massachusetts.” She said she has begun looking for other parents “to join with to shine a spotlight on this and change things so that these things stop happening.”
COFAR has long sought a state investigation of group home conditions in Massachusetts – particularly in privatized group homes. Abuse and neglect in the DDS system is a topic that now and then appears on the political agenda, but rarely attracts sustained legislative attention.
In 2013, after The New York Times and The Hartford Courant both ran separate series on abuse and neglect in privatized group homes in their respective states, Senator Chris Murphy of Connecticut called for a federal investigation of deaths and injuries in privatized care. But Murphy later appeared to back off his call for a comprehensive federal review.
“The bottom fell out”
Anna Eves described her son as a “sweetheart of a guy” and a beloved figure in his hometown of Rockport. He was so popular in high school that he was named the school’s prom king, and he attended graduation and received a standing ovation there even though he didn’t receive a diploma.
But the “bottom fell out” of his care after he turned 22, his mother says. That was when his eligibility for special education funding ended and he became eligible for DDS services.
For several years after turning 22, Yianni lived at home with his parents. But even though he is nonverbal, he wanted independence and was lonely after most of his siblings moved away to start their lives, his mother said. He was excited when in June 2016, he moved into the DDS-funded group home operated by Bass River.
But after what happened in April, less than a year into his residence in the group home, his parents have taken him back home.
A timeline of inattention
Anna had to piece together what had happened to her son in April by talking to caregivers, doctors, and others. She filed a complaint with the Disabled Persons Protection Commission (DPPC) on April 17, and was still waiting as of today (August 23) for the results of the investigation of the matter. That investigation was actually referred by the DPPC to DDS.
Based on Anna’s account, we have pieced together the following timeline of events involving her son before and after he developed symptoms of apparent aspiration:
Saturday, April 8: Yianni’s 29th birthday. He spent most of the day with his parents.
Sunday, April 9: Yanni’s parents took him to a Special Olympics bowling tournament in Peabody. He showed no sign of illness.
Back in his group home later that night, Yianni is believed to have aspirated on a piece of birthday cake, which he had gotten out of bed to eat. His roommate, who had made the cake, was concerned about him.
Anna said her son has had a history of putting too much food in his mouth and not chewing it sufficiently before swallowing. She said the group home staff was aware of that. Yet, to his mother’s knowledge, no one in the group home was aware that he had gotten the cake out of the refrigerator that night.
Monday and Tuesday, April 10 and 11: Yianni was continually coughing in his group home. His roommate, who is verbal, was worried enough that he told his mother he thought Yianni was very sick and that it had been caused by the cake he had made. But no one from the group home apparently made that connection, took any action, or called Yianni’s parents.
Wednesday, April 12: Yianni was sent as usual to his day habilitation program in Beverly, run by EMARC, a DDS provider. He was coughing so much that the day program nurse sat with him at lunch because she was afraid he was going to choke on his food. The nurse reportedly later suggested to the Bass River group home staff that Yianni be taken to a doctor, but the nurse did not arrange for that herself.
Anna said the nurse later changed her story and told her Yianni had been coughing only moderately at his day program.
Thursday, April 13: Anna received an email that morning from the group home director, stating that Yianni had woken up that morning not feeling well and that he was being taken to see a nurse practitioner at his doctor’s office that afternoon.
The email from the house director said that Yianni had congestion, a cough and “a bit of a runny nose,” so Anna was not overly concerned. The email did not indicate that Yianni’s coughing had been going on for days or that it was getting worse. It was the first time anyone in the group home had sent any message to Anna that week indicating that her son was not well.
The house director added that the medical appointment was at 1:30 p.m. and that she would update Anna with the results. A staff member did finally take Yianni to his primary care doctor’s office at the Cape Ann Medical Center in Gloucester.
Anna said she learned that the group home staff member told the nurse practitioner falsely that Yianni had started coughing only that day. The nurse practitioner took a blood sample, but did not do a chest x-ray.
According to Anna, the blood test showed a high white blood cell count consistent with an infection, and a potentially low blood oxygen level of 90. She said the blood oxygen level should be 99 or 100.
The nurse practitioner diagnosed Yianni’s condition as bronchitis and an upper-respiratory infection. She performed a nebulizer treatment on him and prescribed cough syrup and Mucinex and Robitussin, which are over-the-counter decongestants. Despite the results of the blood test and the low blood oxygen count, the nurse determined that Yianni could return to his residence.
Anna said she later learned that the group home staff had removed her name and phone number as her son’s primary medical contact and substituted the group home phone number without her permission even though she is her son’s legal guardian. As a result, no one at the medical center had any means of contacting her regarding her son.
That same afternoon, Anna said, the house director called her, but it was actually by accident. The director had meant to call Yianni’s roommate’s mother. But Anna pressed her during the phone call about her son’s doctor’s visit. The house director appeared to be rushed, she said, and told her only that her son had allergies.
Friday, April 14: The group home director took Yianni as usual to meet with his job training coach at Community Enterprises, Inc., a DDS provider, in Salem. The job coach later told Anna she was alarmed at how sick Yianni appeared. However, the job coach did not take any action or contact anyone about him at the time.
Saturday, April 15: A group home staff member dropped Yianni off at a Special Olympics track practice in Gloucester. His parents were there to meet him, and it was the first time they had seen him since Sunday, April 9, the day after his birthday.
Anna said that when she first saw the group home staff member at the Special Olympics event, her son was in the bathroom. “She (the staff member) didn’t say anything,” Anna said. “She just handed my husband, James, his overnight bag and drove away.” When her son emerged from the bathroom, Anna said, she and her husband were shocked at how ill he appeared. “He was coughing and his eyes were sunken,” she said. A Special Olympics coach approached her and said her son did not appear well enough to participate in the practice.
Anna took her son home and tried to give him lunch, but he wouldn’t eat. Then she looked into his overnight bag and saw the Mucinex for congestion. “I thought he just had allergies, but when I saw the Mucinex, I thought right away something was not right.” At that point, Yianni appeared lethargic and didn’t want to move.
Anna thought about calling an ambulance, but then drove him to the emergency room at Addison Gilbert Hospital in Gloucester. There, his blood oxygen was measured at 50, which is not compatible with long-term survival. His right lung was completely filled with fluid. He was admitted directly to the ICU in critical condition.
Monday, April 17: Yianni was placed on a ventilator on which he would remain for 11 days. Anna called the group home in the morning and left a voice message that Yianni was in the hospital ICU in critical condition on a ventilator with severe pneumonia.
Yianni in the ICU at Addison Gilbert Hospital in Gloucester
Tuesday, April 18: The group home director returned Anna’s call from the previous day. “She said she heard Yianni was sick and was sorry to hear it,” Anna said.
Anna said she asked the house director why she had not informed her during the previous week that her son was sick and why she had told her falsely that he only had allergies. She said the director responded by saying she didn’t know why she had not told her the truth about the situation. She said the director then said to her, “’It’s all my fault.’”
Thursday April 20: Larry Lusignan, executive director of Bass River, Inc. called Anna “to ask what happened,” she said. She said she told him her son would not be returning to the group home and that she had made arrangements to pick up his belongings from the residence. She said Lusignan never acknowledged any wrongdoing.
Sunday, April 23: Yianni was moved from Addison Gilbert to the ICU at Mass General Hospital.
Sunday, April 30: Yianni was moved out of the ICU at Mass General and into the hospital’s Respiratory Acute Care Unit.
Anna said that Yianni spent about a week in the Respiratory Care Unit at Mass General and then spent about three weeks at Spaulding Rehabilitation Hospital.
Thursday, May 25: Yianni was released from Spaulding Rehab and went home to his parents’ house in Rockport.
The ordeal is not over for Yianni. Anna said she was told it could take six months to a year for him to fully recover. His parents are not sure, in fact, that he will ever completely recover. Since his hospitalization, he has continued to need an inhaler and gets out of breath from walking. He needs to sleep at night with supplemental oxygen.
Anna is not sure what is next for her son or what type of residential care would be appropriate for him. “He’ll be home with us until I am 100 percent confident in any placement,” she said.
We think Yianni might be a good candidate for a state-operated group home in which the staff is more highly trained than is largely the case in privatized residences. As we have noted, however, the administration appears to be phasing out state-operated residential options for people.
We hope this case will demonstrate the continuing need for state-run residential programs and that it will lead to better training of staff in all DDS residential facilities. Unfortunately, however, incidents like this seem to continue to happen with regularity in the DDS system.
We would also hope this case will finally spark a hearing by the Legislature’s Children, Families, and Persons with Disabilities Committee into issues surrounding oversight of privatized human services.
