Living on the outside |
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Developmentally
disabled leaving state institution find new life
in the community |
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By Michele
R. Marcucci - Staff writer |
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Article
Last Updated: |
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OHN TOSSETTI
spent more than two decades at "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 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, 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 "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 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
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 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 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 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 "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 "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 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 "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
Now Morris lives in a sparkling, new three-bedroom apartment
in a transit-oriented complex in Morris works four days a week as a greeter at the Regal
Hacienda Crossing Stadium 20 & "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 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." |