Disabled adults finding a new place
Family teaching homes aim to foster maximum independence, but some say the model is flawed.
By Judy Lin
Daniel Bailey puts his dirty clothing in the washer. Tamera Walker hangs her shirts. And Laura Meagher washes her dishes.
The three adults aren’t just being courteous roommates. For the first time since leaving a state mental institution, they’re learning the basics of independent living.
The state Department of Developmental Services has begun moving clients into duplexes such as this one in Cupertino and hiring two caregivers, usually a couple, to live next door. Known as a family teaching home, it’s part of a national trend to integrate the developmentally disabled into communities.
So far the department has opened four duplexes off a busy suburban street in Cupertino, and plans to establish six more duplexes at other sites. But demand for this model of living hasn’t been as high as expected, and many family members are wondering whether disabled people, who suffer everything from autism to severe mental illness, will fare better outside an institutional setting.
“To think, three years have gone by and they’re still having trouble recruiting or retaining these family teachers. I think that raises some issues,” said Brian Boxall, president of a group representing family members of people with disabilities.
Federal and state laws now require that people with disabilities live in the “least restrictive” setting possible. Bailey, Walker and Meagher are among 150 people who have moved out of Agnews Developmental Center, a state-run mental institution slated to close next July. In a philosophical shift on how best to treat people with developmental disability, the state is moving clients from restrictive hospital-like environments to home-like settings to teach them as much independence as they can learn.
Nearly 200 people are yet to be moved out of Agnews, a San Jose campus of more than 80 acres in the heart of Silicon Valley. Cisco Systems has claimed first right of refusal if the property goes up for sale, according to state officials.
Most former Agnews residents will move into licensed residential homes that offer more direct medical care, similar to nursing homes.
At least one skeptical parent has been pleased with the transition into a licensed residential home. Joanie Pepper, whose 49-year-old son, Bruce, uses a wheelchair and suffers from a seizure disorder, worried her son would receive inadequate medical attention after leaving Agnews.
But now that he’s been living at a specialized home in Morgan Hill for two months, Pepper said she feels her son has found a better place.
“I’m very pleased he’s in a home with five residents. We were able to design and decorate (for) them – how we knew they’d be happiest,” Pepper said.
At the Cupertino Family Teaching Home, the state bought four single-story duplexes for $1.7 million and renovated them with wider doors for wheelchair access. A door was also put into a shared wall so the teaching couple could visit the clients.
Previously, the model for family teaching involved placing families and clients together in one home, said Julia Mullen, a deputy director at the Department of Developmental Services.
Mullen said the family teaching model has been around for a decade, but what’s new about this variation is that clients and families have more privacy. As many as three clients live on one side of the duplex, and two caregivers are paid $50,000 total and live rent-free on the other side. Residents are under constant supervision and have support even at night.
Randall and Vesta Lycan have been a family teaching couple since June 2006. They live next door to Bailey, Walker and Meagher.
Randall Lycan, 54, said he learned how to teach and be patient because of his son, who was born with underdeveloped lungs that limited the amount of oxygen getting to his brain. His son is now 27 and married, with three children.
“They told me he could not be habilitated,” said the engineer as he admired one of Walker’s paintings. “I learned how to teach. â€¦ Everyone responds to kindness. They all need a sense of belonging.”
When 47-year-old Walker first arrived at the duplex five months ago, she spent much of her time in a wheelchair. On Thursday, Walker, who is diagnosed with Angelman syndrome, was on her feet, clapping and giving hugs to strangers.
Meagher, 51, was wearing new black sneakers she recently bought at Payless. She earns money by doing chores and being a positive role model for her two roommates.
It’s a hard job, Vesta Lycan said, but one “more rewarding than anything I’ve ever done.”
Boxall, president of the Association for the Mentally Retarded at Agnews, remains skeptical about the family teaching model.
“I think the teaching model probably has merits for folks dealing with Down syndrome or who have relatively high functioning and self-caring skills, but folks who are leaving state institutions typically have much more behavioral issues,” he said.
Boxall said he’s seen ads in the local papers looking for couples, and the number of homes has dropped.
State officials confirmed the reduction but attributed it to the program’s newness.
“Not as many people wanted that model as they originally thought,” Mullen said.
Another deputy director, Eileen Richey, said many families simply preferred to put their loved ones in a traditional licensed group home setting.
Theresa Rodriguez’s daughter, Julie, is now living in another of the Cupertino duplexes. But since developing cancer, Rodriguez has not spent much time with her 45-year-old daughter, who suffered brain damage at birth.
“I don’t really know at this point exactly if she is actually happy there or if she’s not,” Rodriguez said. “The social worker tells me that she is, but I have to see it for myself.”