Living on the outside

Developmentally disabled leaving state institution find new life in the community

By Michele R. Marcucci - Staff writer
Inside Bay Area

Article Last Updated: 5/27/07

OHN TOSSETTI spent more than two decades at Agnews Developmental Center in San Jose, a state institution for people with developmental disabilities.

"It was a hellhole," said the lanky Tossetti, 45, who uses a wheelchair. "It's like living in prison."

But about two years ago, a supported living outfit called Mainstream Support helped Tossetti move out of Agnews and into his own home in Santa Cruz, where he lives with housemates and is supported by staff who plan his day, take him places and assist him with daily activities such as eating and dressing.

He has a volunteer job sorting newspapers and is hoping to land a paying job He takes classes at a local community college. He hangs out in local coffee shops about three times a week.

"I like the room I live in. I like the food. I like everything. I even like the whole house," Tossetti, who is moderately mentally retarded, said during a visit to his home. "I feel a whole lot happier."

Advocates for the disabled say Tossetti and others interviewed for this story represent thousands of people with developmental disabilities who live in community settings and are better for it than the few Californians who remain in institutions. One of the state's five remaining institutions, Agnews Developmental Center, is scheduled to close in 2008. The closure is hailed by advocates who say disabled people should live in the community, yet is feared by family members of the roughly 200 people who still live at Agnews.

Some family members say they don't think available community care is safe enough or has the medical and behavioral resources their loved ones need. As of April 25, 238 people still lived at Agnews, down from the 821 who lived at the institution in July 1994, according to information from the state Department of Developmental Services.

"With certain qualifications, I would agree that institutional care is becoming outmoded," says Brian Boxall, president of the Association for Mentally Retarded at Agnews, a family group. "But I do believe that the developmental centers offer a level of medical and psychiatric services that are not found in the community today."

Boxall points to the recent death of a longtime Agnews resident moved to a group home over the objections of his family as an example of the dangers of life in the community. Donald Santiago, 63, lived at Agnews for four decades before being moved to a Union City home. He died 17 months later of pneumonia and related complications, and the home was cited and fined in connection with his death.

Boxall also pointed to his own bad experience with community care: His brother, David, had seven community placements and, facing a behavioral crisis, ended up in a local hospital before being brought to Agnews for help, he says.

Boxall's group has been pressing the state to build a mixed-use community that would be tailored to the needs of developmentally disabled people but would offer homes and services for all, disabled or not, plus medical and psychiatric service to meet its disabled residents' needs.

Community care advocates and some service providers concede they always could use more resources, but they say there are stories of people being mistreated and dying in institutions, too. They cast the moves from institutions as a civil rights battle on par with those fought by African-Americans in the 1960s. And they say the rights they gain are worth the risks they take.

"Anybody who lives in the community, able or not able, will get hurt and will get sick," says Maria Marquez, a peer advocate for developmentally disabled people at Protection and Advocacy Inc. in Oakland, a federally funded legal outfit for the disabled. "When that happens, you just have to pick up the pieces and get going, that can happen to anybody. They need that self-esteem to pick themselves up."

Community advocates say developmentally disabled people and their families, even those who are frightened at first about community living, are happy when they see what the community has to offer them and their loved ones.

"In our experience, people really succeed and blossom in the community," says Ellen Goldblatt, a Protection and Advocacy attorney. "Family members see that and become supportive. That's our experience."

Goldblatt and Marquez say they understand the families' fears. But they believe their loved ones deserve to live outside an institution's walls.

"There are also some (Agnews residents) who don't want Agnews to close, don't want to move," says Marquez. "It's all they know. For those folks, I wish Agnews can stay open. But sometimes there has to be change. Sometimes, when you make a change, life can be better. And it's just taking that first step."

Better life at group home

Flo Byrne's experience is an example of a family being better for taking that step out of the institution.

Byrne's daughter, Lori, lived at Agnews for 27 years. As a child, she lived briefly in a group home with dozens of other children, where Byrne says she was mistreated. So for more than a quarter century, Lori, now 49, who is mentally retarded and cannot talk, lived at Agnews.

When she heard there were plans afoot to close Agnews, in 2002, Byrne, 74, of San Mateo, knew she couldn't wait to find a new place for Lori to live. She wasn't getting any younger. And she didn't want her children to be left with the responsibility.

Another of Byrne's daughters, Michele, lives at a group home in San Bruno that she is very happy with a place it had taken her and her social worker at Golden Gate Regional Center, which manages care for developmentally disabled people in San Francisco, San Mateo and Marin counties, more than a year of viewing care homes to find, she says.

The sister of the home's owner had opened a new place, San Felipe House in South San Francisco. So there was no question where Lori would go, Byrne says.

Still, Byrne was frightened. Her daughter had lived in a locked ward at Agnews by court order, because she was a flight risk and lacked danger awareness. Byrne thought she'd try the home for a month, and see how things went.

Nearly five years later, Byrne feels guilty for not having made the move sooner. Lori's behavior issues are fewer than they were at Agnews, Byrne says. She hasn't tried to bolt from the home, a tidy five-bedroom spread with antique and marble furniture, framed paintings on the walls and an immaculate yard. She'll even let Byrne kiss her, something Lori wouldn't have done before, she says.

"She's a totally different child. I was shocked," Byrne says. "I thought Agnews was the best place for her. I made a big mistake."

Six women with behavioral issues reside at the house, owner and administrator Thess Novicio says. Novicio and her staff care for the women by providing them an environment she herself would be comfortable living in and by constantly engaging them and involving their families, she says.

"We're hands-on," Novicio says of herself and her sister, Monette Gano, who owns the home where Lori's sister lives. "Sometimes our staff would get annoyed, because we always call."

Living, supported

Scott Beasley of Mainstream, who works with John Tossetti, says community services like his are good ways to support people with disabilities, if done right

To make it work, supported and independent living services like Mainstream's which allow disabled people to live in their own homes by providing help with bathing, dressing, eating and other daily activities access a variety of funding streams, which they use to pay for housing and care staff.

Mainstream also has negotiated a higher than usual pay rate from San Andreas Regional Center, which serves the South Bay, so it can hire experienced staff. And managers there say they have worked to ensure they have access to all the medical services they need.

The goal is to provide services specifically tailored to an individual.

"It's kind of a dude house, and that's OK," Beasley says of Tossetti's Santa Cruz home, stocked with martial arts videos and decorated with sports paraphernalia. "It's John's house. It's set up to work with John."

"I like it. I want to stay here," Tossetti chimes in. "I don't want to go back to Agnews."

Neither does Brandy Vannatta, also working with Mainstream.

Vannatta, 36, who does not want to disclose her disability, lived in Agnews for 41/2 years before Beasley helped her move out.

"I didn't like it. It was boring there," Vannatta says. "Scott said he'd move me out."

Vannatta loves animals and didn't want a roommate, Beasley says. So Mainstream found her a one-bedroom home in Aptos on five acres, with animals. It also found her a job, working with horses two days a week at the Monterey Bay Horsemanship & Therapeutic Center.

"I'll show you the horse I groom. Say hi, sweet guy," Vannatta says to Maverick, who she says is an Arab chestnut mare.

Vannatta grooms Maverick and does other chores around the academy, which services disabled people of all ages. Younger members often go to her for information, Director Anne Phipps says. She recently got to lead the ride down to the academy's private beach.

"We love Brandy to death," Phipps said. "She's a huge part of our program."

When a photographer asks when she can come by to take pictures of Vannatta, she says she's too busy. Her schedule includes college classes, nightclub outings and trips to the Santa Cruz Boardwalk and Dave & Buster's, to play skee-ball and video games.

"If Brandy's up for it, we can do almost anything," says Tracy Infante, who leads the four staff who work with Vannatta. Infante says she's planning a trip to Disneyland for Vannatta and is hoping she can attend whitewater rafting camp.

Unlike institutions or even many group homes, supported and independent living services allow disabled people to be in the driver's seat of their own lives, something that makes them healthier and decreases unwanted behaviors, Beasley says.

"You can choose what goes up on your walls, and who you're working with, and what kind of activities you're doing. It's a tremendous contribution to lowering (Brandy's) level of frustration," he says.

Overcoming adversity

Donald Morris seems like someone who hasn't been frustrated a day in his life, even though his life story would grind a lesser mortal down.

Morris has cerebral palsy, and has used a wheelchair for most of his 47 years. "I don't let it stop me," charming, genial Morris says.

He grew up in foster care and lived in a nursing home for several years before coming to California in 1989. While here, he lived in a Fremont group home where, he says, staff ripped the phone out of the wall when he tried to call his social worker to report problems.

"I was in a bad spot," he says. Then in 1994, he met Tom Heinz, who runs East Bay Innovations, a supported living outfit based in Oakland. And Morris' luck began to turn around.

Now Morris lives in a sparkling, new three-bedroom apartment in a transit-oriented complex in Dublin. He has a clear view of Mount Diablo, BART access that helps him get out to sporting events, and enough space for his collection of jazz and R&B CDs and television series DVDs.

Morris works four days a week as a greeter at the Regal Hacienda Crossing Stadium 20 & IMAX movie theater in Dublin. His Fridays are reserved for soaps, especially "All My Children." Weekends are reserved for sporting events, Morris says.

"I'm the biggest Warriors fan," he says, adding that he was thrilled the team made the playoffs. He and one of his five support staff, Steve Moorhead, are slated to go to an A's game a few days later.

Because the Dublin apartment is Morris' home and East Bay Innovations working for him, he can choose his own staff, decorate as he sees fit, watch what he wants on television "and go to bed anytime I like," he says.

Heinz, whose agency serves 33 disabled people, admits he faces challenges helping his charges, in particular finding suitable places for them to live. It took East Bay Innovations eight months to find Morris his first apartment. At his last home, before coming here, he fell a dozen times in six years because it wasn't set up well to accommodate Morris's wheelchair.

But still, Morris who Heinz says makes friends easily seems unfazed by the challenges he faces and is grateful to Heinz and his staff for their support.

"I have a lot. They've been a family to me," Morris says of the agency. "I'm blessed to be here."