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Conflict
is boiling over care The death of a
severely retarded man is the latest flashpoint in a battle between families
and the state over its developmental centers By Clea
Benson - Bee Capitol Bureau This story is taken from Sacbee
/ News Donald Santiago's mother and sister didn't want the
state to move him out of the They feared that His family says Justin's Home failed to take him to a doctor for almost a week after he fell ill, a charge the home operator disputes. The death of Donald Santiago -- being investigated by the California Department of Health Services -- is one more flashpoint in a wrenching battle between some parents of Agnews residents and the state, which has been under legal pressure to close its institutions and integrate residents with disabilities into their communities. Following changes in state law and a U.S. Supreme Court
decision requiring community living, the number of people living in
developmental centers in Agnews, one of five remaining state centers for people with developmental disabilities, is slated to close in 2008. Only 261 residents remain. Some family members say they fear the state is hastily moving people into existing community homes that are ill-prepared to care for the severely disabled and don't have medical staff on-site, as Agnews does. Though they say they have received little encouragement from state officials, some families also want the state to consider building a mixed-use community where severely developmentally disabled people can live in homes near their caregivers and members of the public rather than in scattered houses. "We're not defending the institutional setting," said Stephen Johnson, head of Keep Our Families Together, an organization representing relatives of Agnews residents. "We're saying we understand that integration is something that needs to happen. But let's do it in a systematic way that keeps professional caregivers involved in the lives of these clients and above all, keeps people safe." One parent, Michael Biggs of Biggs said his son can roam the Agnews campus freely. "If Agnews isn't there, the next best thing would be a mixed-use facility," Biggs said. Still, some disability rights groups believe the existing community homes are working well. "There are in fact many, many individuals living in the community with the same levels of disability," said Ellen Goldblatt, an attorney at the nonprofit organization Protection and Advocacy that has sued the state to speed up the process of moving people out of institutions. "While we think community care always needs to be improved ... we don't believe the community care is inadequate," she said. The state is buying homes and converting them for use by former Agnews residents. Unlike existing community facilities, owned and operated by private businesses, these homes will be owned by the state and staffed by private contractors. Eileen Richey, assistant director of the state effort to close Agnews, described the plan as "very innovative." In the meantime, Richey said, the state has strict standards for moving residents into existing group homes. "It would only be if the planning team felt that the service providers meet all of the standards ... before a person transitions out of Agnews," she said. "The family is involved and has met the provider." On rare occasions, when a family objects to the placement, the state will go to court to force the move, "if someone at a developmental center expresses that they want to leave," Richey said. Donald Santiago had the mental capacity of a 2-year-old
and a vocabulary of only a few words, according to his sister, Angie Abrue of But the state argued that Richey said she could not comment on a specific case, citing confidentiality rules. But it is "extremely unusual" that the matter would end up in court, she said. Abrue said she and her mother objected to moving her brother because of the record of the Justin's Home operators, Pacifico and Thelma Ruiz. Though Justin's Home had only recently opened, another
Recent records show Justin's Home and Mika's Home were cited in October for inadequate access to nursing care. Pacifico Ruiz, in a telephone interview, said the citations were for minor improvements that had to be made. "Overall, the general care that we provide is far and beyond" what state regulations require, Ruiz said. In 2002, health department investigators cited Mika's Home after a complaint that a resident had received emergency treatment only after he insisted on going to a hospital. "It was fortunate that this client could request to go to the emergency room of his own accord," the report says, "as he required prompt medical attention for pneumonia." Four years later, on the day before Thanksgiving, Donald Santiago fell ill. Being nonverbal, he couldn't tell anyone, family and friends said. But aides at Six days passed before the staff at Justin's Home took
Dr. Antonio Uy, a In a telephone interview, Uy
said there was no indication that "His color was good," Uy recalled. But the next day, at Justin's Home, He spent the next couple of weeks fighting for his life in the hospital. Finally, his organs failed. He died Dec. 11. Ruiz said he could not comment specifically on State officials said they could not comment while the health department is investigating. Brian Boxall, president of the Association for the Mentally Retarded at Agnews, a group representing families, said the court system never should have ordered the move in the first place. "My sense of anger is most focused on the judge, the (district attorney) and the public defender who all orchestrated his placement knowing that his group home operator had these kinds of citations," Boxall said. "In that respect, Donald really was a victim of the system." Goldblatt, whose organization
has assisted others in getting court orders but was not involved in "It was our understanding that he got to court because he really wanted to move," she said. "It's tragic that he then died. It's also nice that he got to move after so many years of living in an institution." Meanwhile, Donald Santiago's family hopes his story helps others. "I feel that (Donald) would still be alive if he would have stayed in Agnews or he wouldn't have moved into this group home," Abrue said. "It's too late for my brother now, but (not) for the other ones that are going into the homes." About the writer: The Bee's Clea
Benson can be reached at Click here to see photos and photo captions that go with the article – http://www.sacbee.com/101/story/101279.html [Photo] Steven Biggs, who is severely autistic, wipes
down a state vehicle at [Photo] Donald Santiago, who was mentally retarded, died Dec. 11 of pneumonia. His family fought his transfer from the Agnews center. Special to The Bee/Brian Boxall [Photo] Steven Biggs spends time in his room Friday at
Agnews. He'll be moved to a group home if the state facility closes in 2008
as expected. |