Shift alarms parents
When San Jose developmental
center closes in 2008, they worry their children won't get care they need
By Clea Benson - Bee Capitol
Bureau
Published Stacy Cole has been living in
Auburn, where she rides and works with horses, after spending much of her
life in institutions and group homes since the age of 3. Sacramento Bee/Anne
Chadwick Williams After operating for more than a century, the state-run Agnews Developmental
Center in San Jose is slated to close in July 2008. And the nearly 250
developmentally disabled residents, some of whom have lived there for
decades, will be scattered into smaller homes. It will be the largest mass move in state history of people with
disabilities into the community, and it's part of a legal and cultural shift
away from institutions. Federal and state laws now require that people with
disabilities must live in the "least restrictive" setting possible. But a group of parents of Agnews residents is raising new concerns about
whether the state is planning to provide adequate health care to their
children once Agnews closes. The parents' group is also racing against time to persuade the state to
build a master-planned development that has a central medical center, a
concentration of small homes for people with disabilities, and homes for the
general public. The state instead is buying a number of houses in different
locations that will be turned into group homes operated by private contractors. The parents' group, the Association for the Mentally Retarded at Agnews,
plans to turn out in force Monday at a state Senate budget hearing to try to
persuade lawmakers to back them. They are particularly concerned that an outpatient clinic established to
serve people who have moved out of Agnews is slated to close in July 2008
when the rest of Agnews shuts down. "Many of our children are very medically fragile," said Joanie
Pepper, whose 49-year-old son, Bruce, has lived at Agnews for 30 years.
"We've been able to sleep at night knowing they're getting the proper
care (at Agnews). Now they're going to move our kids out and not have a very
complete plan." Terri Delgadillo, director of the state Department of Developmental
Services, said efforts are under way to allow medical staff who have worked
at Agnews to contract with group home operators and health plans to provide
care to former developmental center residents. Ultimately, though, it will be left up to each group home operator to
arrange medical care. And that makes members of the Association for the
Mentally Retarded at Agnews uncomfortable. They point to the example of Donald Santiago, a former Agnews resident
who died of pneumonia late last year after being moved to a Union City group
home. The doctor who worked with the home had an office miles away in South
San Francisco and a felony record of mail fraud. He did not diagnose the
pneumonia, and Santiago ended up in a hospital days later. State investigators found that the group home failed to have a nurse
sufficiently involved in Santiago's care. They issued an $800 fine. The
home's operator has appealed. "If you have an unscrupulous (group home operator), they are going
to go with whatever doctor's out there, regardless of whether they have a
felony record or not," said Brian Boxall, president of AMRA. Delgadillo said the state will closely monitor the health care of each
former Agnews resident. "We've taken many of the recommendations of the families in terms of
increasing the health care review and planning," she said. Underlying the medical care debate are fundamental disagreements about
what living arrangement is best for people with developmental disabilities. No one is arguing for a return to institutions. But parents say they feel
the state has worked against the mixed-use community that they would prefer. "No care system is perfect," said Steve Johnson, director of a
group organizing the push for a master-planned development. "But the
families should make decisions, not outsiders." Delgadillo said state officials have included family members at every
step of the years-long planning process. The state might be open to a
mixed-use development if families can find an appropriate place for it, she
said. But that has proved difficult, given the price of real estate in the
San Jose area. Meanwhile, some advocates for people with disabilities oppose a planned
development. Ellen Goldblatt, an attorney with Protection & Advocacy Inc., said
living arrangements should not lead to more than the "natural
proportion" of people with disabilities in a community. "When you have a whole group of people with disabilities, people
tend to see them as (different) and therefore leave them to themselves,"
she said. Goldblatt points to the experiences of people like Stacy Cole, 42, of
Auburn, who lived in institutions and group homes from the time she was 3.
She moved from a developmental center into her own apartment three years ago.
Staff members from a West Sacramento-based agency, Creative Living Options, are
with her around the clock. In her new life, Cole rides and cares for horses at a local farm, plays
bingo at a nearby church, and plays solitaire on her own computer. When she's
hungry, she can make herself a peanut butter and jelly sandwich in her own kitchen. "This is so good out here," Cole said. "So if you close
the institutions down, everybody can be on their own." Likewise, Katie Goeden, 28, who has cerebral palsy, said she enjoys the
freedom of her West Sacramento apartment. Goeden moved from her parents' home
to the apartment, which she also shares with around-the-clock caregivers. Goeden said she likes being able to talk on the phone with friends, go
out to clubs, or stay up as late as she wants. "I really like the fact that ... no one tries to take control of
what I do," she said. Pepper said an arrangement like Cole's or Goeden's would not work for her
severely disabled son, Bruce. Bruce, she said, couldn't "live a life like that." But Pepper said her son has formed close bonds over the years with other
Agnews residents and with staff and would be happiest living near them in a
planned community. The budget committees in both the Senate and Assembly have the power to
direct some of the Agnews plans because the services are covered with
government funds. State law guarantees that the state will pay the costs of
caring for the developmentally disabled. When Agnews closes, the state will save money. A year at Agnews is about
$500,000 per resident, while a group home costs about $55,000 per resident, according
to the state. The Senate budget hearing on Agnews will take place at 1 p.m. Monday. The
Assembly budget subcommittee on health and human services will hold a hearing
on the same topic at 1:30 p.m. Thursday. |