Cathy died last November at the age of 51, after Mary brought her to her own home to live following her eviction from the group home. Mary believes that the disruptive conditions in the group home may have hastened Cathy's death. Cathy, who had mental retardation but was verbal, had congestive heart failure and was on oxygen. “She shouldn't have been subjected to loud noises,” Mary says.
According to Mary, the head of the provider organization never seemed concerned about the disruptive conditions and missed meals in the home. But he was incensed that Mary had called the police and had raised other issues about her sister's care, including taking her complaints to DMR.
Mary says she was informed in a letter from a DMR area director in December 2007 that the provider wanted her sister out of the residence. When she asked what grounds the provider had to order her sister out, she says the DMR official told her that the provider did not need any grounds to do so.
Cathy had lived for most of her life at home with her mother in Cambridge. But her mother died after a short illness in 2004 at the age of 87, and Mary stepped in as guardian to her sister. Mary even temporarily moved out of her own house in Andover and moved in with her sister in her mother's house in Cambridge. But Cathy's health began to decline after her mother died, and she began to need oxygen 24 hours a day.
Mary began looking for a residential program for Cathy. Cathy's DMR service coordinator recommended the group home in Belmont, and Mary went to see it. It was a two-family home, newly rehabbed, with a re-done basement and air-conditioning. “It looked like a great setup,” Mary says. The provider representative, who showed her around, told her that the group home staff was there 24 hours a day. The residents were all women and so was the staff. “She portrayed it as a family,” Mary says. “There was a gas grill in the back yard.”
Cathy moved into the home in April 2005. Mary adopted a “hands on” approach to Cathy's care and frequently visited the home unannounced. She often brought food to the house and sometimes cooked holiday meals for all the residents there. She also volunteered at Cathy's day program in Malden every Thursday, and often took Cathy home with her for long weekends.
For the first couple of years, there were no major problems, Mary says, although the back yard grill was never used and there were no cookouts. But then a large turnover occurred among the staff. One day, Cathy called Mary to tell her that she had seen one of her roomates crawling out of a bathroom with no clothes on. It appeared she had fallen and was injured and was not being attended to. After that, Mary says, “my guard was up.”
Then, one weekend morning at 9, Mary called her sister. “She seemed very down. I asked her what she had had for breakfast, and she said just an English muffin. Mary said she asked to speak with a member of the staff on duty. “I said to the staff person that all my sister had had for breakfast was an English muffin. She told me she could give her a hotdog. I said 'a hotdog for breakfast?'”
Mary drove directly to the house that morning. When she got there, she noticed that Cathy had dried brown secretions under her eyes. Not only did the two staff workers on duty deny knowing anything about that, Mary says, but they wouldn't even acknowledge that Cathy's eyes looked different than usual. Mary took Cathy to her doctor, who said she had a severe sinus infection. She kept her at home with her for the next 10 days.
After that, Mary says, she lost trust in the group home staff to take her sister to doctors appointments. Her sister was losing weight and had several unexplained urinary tract infections. Mary filed complaints with the Disabled Persons Protection Commission. And in October 2007, she met with the DMR regional director, the DMR area director, and with the provider agency head.
It was at the DMR meeting, Mary says, that she felt that not only were the DMR officials unconcerned about the conditions in the group home, they were actively seeking to turn the tables against her. Joan Thompson, the DMR area director, accused her of illegally transporting her sister's medications when she took her home with her on long weekends.
“It was ridiculous,” Mary says. Taking her sister's medications home with her was a necesssary arrangement that she had worked out with the house manager.
Meanwhile, the conditions in the home continued to deteriorate. Mary said her sister and other residents told her they frequently didn't get fed. There was a frequent, strong odor of disinfectant in the home, which was making her sister cough. When she called the residence, she would get endless busy signals. She once witnessed one staff member get into a loud altercation with a man delivering medications to the house after the staffer had been unable to sign her full name to the receipt.
Verbal fights among the staff began to intensify. One evening, Mary received a call from her sister on her answering machine. “You could hear screaming and yelling in the background.”
Mary then found out that the DPPC had transferred its investigation of her complaints back to DMR. Not surprisingly, DMR found no grounds for her concerns. It was after that that Mary called the house one day in November 2007 and heard the screaming again. She hung up and called the Belmont Police to come to the house. “I'd had it,” she says. “I no longer trusted DMR to do anything. I wanted a restraining order.” But the police, who did question the residents and staff, told her they couldn't remove anyone from the house unless there was evidence of bodily harm.
Shortly after that, Mary says, she received the letter from Thompson, the DMR area director, that the provider head wanted her sister removed from the house. At that point, she called the office of her state senator, Steven Tolman. His staff set up a meeting with her. But Mary says that when she arrived at Tolman's State House office, she was surprised to find that Larry Tummino, a DMR deputy commissioner was there.
“His (Tummino's) first words to me were that the provider had a five-star rating with DMR, their highest (licensure) certification,” Mary says. “Then he asked was it my intention to take them (the provider organization) down?”
The upshot of that meeting was the scheduling of another meeting conducted by the Massachusetts Office of Dispute Resolution in January 2008, Mary says. It was a meeting in which Mary was required to sign a pledge of confidentiality and in which there was no verbatim transcript. Although the University of Massachusetts mediator was paid $300 an hour to run the meeting, there was no happy resolution to Mary's situation. The provider organization head reiterated his intention to evict her sister.
Mary says that she spoke with an attorney at that point who told her that her only recourse would be to fight the eviction in court–a battle that could cost her as much as $25,000. Mary decided she couldn't go through with that, and she removed her sister from the residence in May 2008 and brought her home to live with her. Cathy died seven months later.
“If DMR and its providers can treat people the way they treated us, and just terminate their services like that, where does that leave all the people in the state facilities?” Mary asked. “They're going to close those four faci
lities and just send all those people into the provider system where they will face the same thing we faced. It makes me sick.”