Donald Santiago lived for 40 years at Agnews Developmental Center, a state institution for developmentally disabled people in San Jose.

But the severely mentally retarded 63-year-old died after 17 months of court-ordered placement at a Union City care home — a placement his family begged the court and those who managed his care not to make and which his family believes hastened his death.

His life, and death, are at the center of what some families fear could be a growing battle between themselves and the agencies responsible for providing and managing their loved ones' care, capped by the planned closure of Agnews in 2008.

It's a battle that has been brewing for decades: community care versus institutional care. The advocates for community paint theirs as a struggle for the civil rights of the disabled, an opportunity for them to lead a more normal life. But those with loved ones still in the institutions fear community care could be deadly, and they want the problems they see in care homes to be fixed before their loved ones are moved.

"I believe placements out of Agnews are going to be more and more aggressive in 2007," said Brian Boxall, president of the Association for the Mentally Retarded at Agnews, which advocates for families of people living at Agnews.

But state officials, who said use of the court process is extremely rare, said they are working to clarify the guidelines for placements from state institutions to the community.

Eileen Richey, assistant director for the plan to close Agnews, said new guidelines should be available for use there by the end of this month and at the state's other institutions for the developmentally disabled sometime after that. It is not clear whether the guidelines would have helped in Santiago's case.

Terry DeBell, president of the California Association of State Hospital Parent Councils of the Retarded, said her group is asking the Department of Developmental Services to change guidelines on how to interpret non-verbal communication so that families and professionals specializing in such communication are involved.

Richey said she could not comment specifically on Santiago's case, as did Jim Burton, executive director of the Regional Center of the East Bay, the nonprofit agency charged with managing Santiago's care. The state health department is investigating the home — Justin's Home in Union City — in the wake of Santiago's death, and Richey said the regional center has deployed staff to the home and launched an independent investigation of Justin's Home and others its owners operate.

Family members and friends said staff at the care home waited almost a week to seek medical care when Santiago fell ill shortly before Thanksgiving, despite pleas from the family and staff at his day program to take him to a doctor for symptoms that included violent coughing fits and vomiting. He died Dec. 11 of aspiration pneumonia, sepsis and cardiopulmonary arrest, according to his death certificate.

"They didn't totally neglect him, but they didn't understand what to do," Santiago's sister, Angie Abreu, said of the care home's staff. "Their ignorance on medical care caused him to die."

Dr. Antonio Uy, who works with the care home, prescribed Santiago cough medicine and antibiotics — a care decision the family and Boxall said may not have been enough. Santiago collapsed the next day at his care home and was taken to the hospital, they said.

"He was sleepy. But that was his appearance all the time," said Uy, whose office is in South San Francisco, of Santiago's final visit, defending the treatment he prescribed. Uy didn't comment further.

No place else to go

Both the state Department of Developmental Services, which is ultimately responsible for the care of California's developmentally disabled residents, and the heads of three local regional centers, the nonprofit agencies that directly manage disabled persons' care, said they will ensure proper care for all who will be displaced by Agnews' closure.

But Santiago's family said they were forced to accept less.

"We weren't arguing not to put him into a home, because Agnews was closing, but we wanted to have a choice," Abreu said.

Abreu said her brother's regional center caseworker told her family that he should move out of Agnews, and that there was just one place he could go: Justin's Home. 

The home had just opened and hadn't yet established a licensing track record, Boxall said. But Boxall said another home operated by the family that owned Justin's was cited for more than a dozen deficiencies during a 2004 visit, including citations for failing to obtain proper medical care for one client and failure to provide proper nursing services to two others.

Justin's Home was cited for 11 deficiencies during a 2005 inspection, which included two for failure to provide adequate nursing services, licensing records show. But it garnered just three citations when the state checked it in October, the records show.

Pacifico Ruiz, who runs the home, said he couldn't comment on specifics of Santiago's case. But he defended the care his home provides.

"We provided him good quality care, far and beyond the standard," Ruiz said.

Ellen Goldblatt of Protection and Advocacy, Inc., a legal advocate for the disabled, said developmentally disabled people die regardless of the location or quality of their care.

"People die in the community and in the developmental center. They die because of tragic, inappropriate care and without inappropriate care, in both settings," Goldblatt said.

Goldblatt, whose group feels community care is far superior to that offered in the institutions, said court processes to help people move aren't being used enough. On the contrary, she said, family objections are too often used to block moves.

But Abreu said that wasn't true in her family's case.

Abreu relayed her concerns about the home to Santiago's case manager, but they fell on deaf ears, she said. She was then given a choice: accept the move or be taken to court.

The family asked Santiago's case manager if he could find a home closer to Abreu's home in Placerville, but he said there were none available, according to family accounts. Agnews' clients rights advocate filed papers with the Santa Clara County Superior Court, saying Santiago himself had indicated he wanted the move, Abreu said.

But Santiago's family said he never expressed an interest to them in moving. Santiago didn't talk, Abreu said. And even if he could, Abreu questioned whether he was able to make an informed decision.

"People do have rights," she said. "But when they have a mentality of a baby, how could they understand their rights?"

The family had just started looking into what they would need to do to have the legal say-so over Santiago's care, Abreu said. Without it, Santiago was legally responsible for making his own care decisions.

Courts not perfect

In a brief hearing, the court OK'd Santiago's move. The family objected, but they lacked a representative there. Judge Thomas Edwards suggested they get a lawyer, a court transcript shows.

Edwards did not return a call seeking comment. But the attorneys involved in the case admitted the courts aren't perfect.

"The court's the place that we have now. I don't know what other body can do it. No one else is charged with that responsibility," said Mairead O'Keefe, the deputy public defender who represented Santiago in court. While she fought for the move, she would not say whether Santiago indicated to her that he wished to move.

But Donald Querio, an attorney representing another family in a similar dispute over moving their loved one out of Sonoma Developmental Center, is arguing that an alternative does exist: the administrative hearings typically used to solve disputes over a disabled person's care plan.

Burton, executive director for the Regional Center of the East Bay, said his agency has engaged in just one such court action involving a placement dispute with a family. He said it's something his agency seeks to avoid.

"We work very hard to reach consensus with families. And we do, 99.9 percent of the time," said Burton, who said he cannot comment specifically on Santiago's case.

Burton said he is obligated to help his clients move out of institutions if they wish to do so, and that even those who can't talk are able to communicate their wishes.

And Goldblatt said pneumonia is a common cause of death for disabled people.

Burton said that over the last 19 months — roughly the time Santiago lived at Justin's Home — five of the 64 clients his agency served at Agnews died of pneumonia.

Abreu said she shared her story in the hopes that what happened to her family doesn't happen to anyone else.

"My brother died, and I don't want it to happen to anybody else," she said. "That's why I'm making an issue of the whole thing."