IF HIS family had their way, 63-year-old Donald Santiago would never have left his institutional home at the Agnews Developmental Center in north San Jose.

Born severely retarded, Santiago was at the center of a public battle two years ago between his family and the state that mirrored a larger debate about the placement of developmentally disabled persons in the face of mandated closures of institutional centers such as Agnews. In late June 2005, a Santa Clara County judge ordered that Santiago—who had been a resident at Agnews for almost 40 years—be placed at Justin's Home, a privately run group home in Newark, despite the passionate objections of his sister and 86-year-old mother, who insisted that he would receive substandard medical care.

Tragically, it appears they were right. One month ago, weeks after contracting pneumonia, Santiago died at a Fremont hospital. Suddenly, in death, he looms larger than ever in the fight over the impending closure of Agnews.

"I think of Donald as a martyr now," says Angie Abreu, Santiago's 59-year-old sister. "One of the main issues I feel now that Donald has died is that I don't want anything to happen in any of the other homes. I'm very, very angry about the whole thing. When we went to court, the judge didn't give us a choice about which home to put him in. Now I'm really angry because we were trying to tell him that we want Donald well taken care of and, a year later, he dies. I'm going to fight it until they do something."

The facts surrounding Santiago's death are not entirely clear; representatives of his group homes as well as medical staff involved with his case refused to comment about the specifics of his case, citing the state's confidentiality rules. However, family members and local advocates were willing to be interviewed about Santiago's last days.

On Nov. 22, he was sent, as usual, to the Union City-based Green Oaks Day Program, by the staff of his assisted-living residence at Justin's Home. Staff at the day program called Justin's Home and warned workers there that Santiago was exhibiting signs of illness. Two days later, Abreu and his mother visited him at Justin's Home; both noticed that he was agitated, grabbing his mother's arm and throwing himself on the floor.

"My mom told them that he wasn't feeling good," says Abreu. "And she's his mother, she would know. And these people that Justin's Home keeps hiring, they don't know him well enough."

Abreu says neither she nor her mother were told by the staff at Justin's Home that day-program workers had concerns about his health, Nor were they told that he had lost his appetite.

"I wasn't told anything before—even on that Friday," she says. "They didn't tell me that he wasn't eating. If they had told us then, I think my brother would still be alive. If they had told us then, I would have said 'you better take him to the hospital to find out what's wrong with him. Him not eating is a way of telling us that he's not feeling well.'"

Over the weekend, Santiago began coughing and vomiting, but instead of being taken to a doctor, he was taken, along with other residents at Justin's Home, to an outing at a nearby park, says his family. On Monday, he was sent to his day program in Union City again; the staff at the day program immediately sent him back and advised that he see a doctor.

On Tuesday, almost a week after Santiago initially exhibited signs on illness, he was taken to a doctor in South San Francisco by the staff of Justin's Home. The doctor sent him home with cough syrup and prescribed him antibiotics.

The next day, while a staff member was dressing him, Santiago collapsed, slid on the floor and stopped breathing. The operator of Justin's Home, Pacifico Ruiz, was on vacation in the Philippines, and Ruiz's replacement administered CPR until the paramedics arrived.

Santiago spent the next two weeks on a respirator in the hospital and died on Dec. 11 after his organs failed. His family suspects that vomit entered his lungs and caused aspiration pneumonia.

More Like Donald

Santiago's death, now being investigated by the California Department of Health Services, raises new questions about Agnews ongoing plan to route developmentally disabled residents to integrated living in privately run and loosely regulated assisted-care facilities such as Justin's Home.

"I think there's a place for privately operated homes," says Brian Boxall, the president of the Association for the Mentally Retarded at Agnews, who had advocated against Santiago being sent to Justin's Home. "For a lot of disabled individuals, that's the best living situation for them. But we have to understand that one size doesn't fit all, and different models should be developed according to different needs."

However, Santiago's case adds a grim twist. He was sent to Justin's Home over the objections of his family only after a Santa Clara Superior Court judge agreed with the state in 2005 that Santiago, who was largely non-verbal and had the mental ability of a 2-year-old, had expressed a desire to leave Agnews for Justin's Home.

Santiago's family was especially troubled by the track record of the operators of Justin's Home. As reported by Metro in 2005, Mika's Home, another home operated by the same owners, had been subject to several citations by state regulators. Mika's Home was doled out three violations in 2002 and 30 in 2004. At the time, Santiago's state-run placement team described the violations at Mika's Home as "par for the course" and "growing pains."

One violation from 2004 even seems to have parallels with Santiago's story, as told by his family: An inspector determined that Mika's Home failed to protect the rights of a resident when the facility "failed to inform each client or representative of the client [about the client's] medical condition [and] behavioral status risks."

Santiago's family has also consistently questioned the South San Francisco doctor, Antonio Uy, that Ruiz chose for Santiago. Uy, who filed for bankruptcy in 1999, also has a felony conviction. Santiago's family preferred a doctor associated with Agnews, or, at the very least, a doctor closer to home.

"Why would they hire a doctor that's a felon?" asks Abreu. "We tried to get any other doctor besides that one. Pacifico Ruiz said that's the only doctor [for developmentally disabled patients] in the area. He isn't even in the area! To me, South San Francisco is not local. That's one of the things I kept arguing with him about."

When reached for this story, Uy explains that his felony conviction stemmed from an insurance capping scandal in 1995 for which he received three years of probation. In 1995, Uy's medical offices were implicated in a scheme to illegally sell car accident victims' names for illegal medical records. Uy says his conviction is no longer on his record. Uy, who has been a friend of Ruiz, a fellow Filipino, for the last decade and handles two of the care facility operator's homes, also says that his treatment of Santiago was adequate. But, underlining the family's point, he said Santiago may have had a chance for survival had he been seen by a medical professional earlier.

"Definitely," Uy says, "because the infection process could have been controlled right away. However, this is a very complicated line because the patient always had this kind of problem ... even at Agnews. You don't know when it will worsen and when it will not because he is not that young anymore. [The blame] cannot solely be the facility [Justin's Home] because there are two places where the patient stays, the day program and the facility. If there were problems at the day program, they should have also picked up on them [and sent Santiago to a doctor]."

A call to Ruiz, the operator of Justin's Home, went unreturned. Jim Burton, the director of the Regional Center of the East Bay, the quasi-governmental body responsible for placing Santiago at Justin's Home, declined to comment, citing client privacy rules.

Santiago's death, meanwhile, has sent shock waves through the small community of families that are affected by decisions at Agnews. Boxall says one person who has a sibling at Agnews, told him that "Donald could have been any one of our brothers."

"It represents the things that can go wrong when the system tries to put its own needs above the needs of the clients that they are charged with serving," says Boxall. "I think were this left to the family and to Donald's interdisciplinary team [a group of experts at Agnews], the outcome would have been much different. But in the haste to close Agnews, I think a lot of Donald's needs were sacrificed, and I think it shows that families need to be vigilant in protecting the rights of their loved ones. Something like this should never be decided in a courtroom."

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