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Taking the Road to Freedom
Photos by Janet Orsi
A little help from his friends: With assistance from local advocates, Michael Pasquini, above, has gained the freedom to live on his own.
Developmentally disabled adults finally won the right to live on their own. But will federal budget cuts end hard-won freedoms?
By Trine Miller
MICHAEL PASQUINI'S day is like any one else's--sort of. In the morning, he rides a bus to work in north Santa Rosa. In the afternoon, he returns to work at his own apartment. In between, he eats lunch with co-workers, maybe does a few errands.
Quite normal, and yet quite remarkable.
Just a few years ago, Pasquini, 48, spent his hours--along with hundreds of others--behind the walls of the Sonoma Developmental Center, playing games and watching TV, seldom leaving the 1,600-acre compound.
But, just a short while ago, he got a chance to leave and took it. A lifetime bout with cerebral palsy has left him in a wheelchair with limited arm movement and only partial control above the neck. He is also developmentally disabled. So the idea of living in the world was always just that--an idea--until he got help.
The North Bay Regional Center is part of a state system that oversees the needs of the developmentally disabled: people with autism, cerebral palsy, epilepsy, or mental retardation. Over the last few years, the center has helped about 2,000 people to leave SDC, part of a statewide trend that is allowing people like Pasquini--including those with more severe physical and developmental disabilities--to move into the community to live and work.
But these days, there is some fear that this tide is changing. If government Medicaid cutbacks continue and state control replaces federal guarantees, people like Pasquini may not have the chance to experience the simple things in life outside the walls of an institution.
Not My Brother's Keeper: A personal story.
Wearing an earring in his left ear and a brand new pair of very chic wire-rimmed glasses, Pasquini doesn't fit any mold. While his movements may reveal the involuntary effects of cerebral palsy, don't let that fool you. When I interview him on his break from work, Pasquini is unequivocally clear about life on the outside. And he puts up with my invasive questions with a mixture of seriousness and jubilance. "I like it," he says of living on his own. "The developmental center is too institutionalized. I had people breathing down my neck. . . . You have people watching you all the time.
"That bothers me."
Formerly known as the state hospital, the developmental center had for a long time been the only option for people like Pasquini. The institutional nightmares of long ago, the horror stories of inhumane treatment, are gone. But they've given way to something equally frustrating, equally sad. There are still people there who don't want to be.
Fortunately for Pasquini, his parents didn't have conservatorship of him and couldn't stop him from moving out on his own. "My parents didn't swallow it very well, though, 'cuz, you know how parents are," he says. "My mother begged me not to do it. [But] she's happier now. Finally."
Even people who helped him leave SDC are surprised that Pasquini has been able to move from a group home into his own apartment. He's what you'd call a frontiersman for people with developmental disabilities.
A great opera fan, Pasquini may now listen to Wagner's Faust Overture whenever he likes. He touches his handsome salt-and-pepper beard as he reflects on the benefits of his new lifestyle. "My personal life is better," he concludes.
PASQUINI and others had to work hard to get things changed. There's a bureaucratic boundary that's difficult to cross: Developmental centers get federal money that until recently couldn't be transferred into the state-funded community along with the individual. Now just some of that money moves in the form of Medicaid waivers.
The irony is that it costs much more to keep someone in SDC than to keep them in the community. Try an average of $110,000 a year at SDC, compared to about $45,000 on the outside. That's reason enough to support independent living.
But perhaps an even more compelling reason has to do with human rights.
"The benefit [of these programs] is the extension of the civil rights movement," says John McCue, executive director of the Santa Rosabased Becoming Independent. A longtime advocate of the developmentally disabled, McCue explains that rubbing elbows with our fellow man is as necessary for someone imprisoned by a physical or mental ailment as it is for anyone else. He feels it is an indisputable covenant between society and the individual.
That's part of the argument that won a class-action lawsuit in 1994 against the state Department of Developmental Services. The Coffelt lawsuit--waged by Bill Coffelt, whose son is severely developmentally disabled--argued that Medicaid money going to developmental centers should be redirected to community resources. Coffelt had searched for a group home and other essential services for his son, but found few available. So he took the DDS to task and won.
The results of that suit are a crucible for future generations, as more and more people are released from SDC into community programs. DDS committed $334 million in Medicaid funds to the regional center system to move 2,000 people through the year 1997. They've unofficially vowed to continue beyond that time. But if cutbacks contained in the House Republicans' Contract with America follow through, federal block grants could devastate the community system.
The funding breakdown for people with developmental disabilities goes like this: The individual gets federal Medicaid subsidies for health care, housing, and transportation; regional centers provide the rest. Five years ago, regional centers were almost entirely funded by the state. Now, federal Medicaid funds flowing from the Coffelt lawsuit account for 55 percent of the revenue. And the developmentally disabled have an entitlement from the state, meaning their funds are separated from, say, the impoverished or the elderly, and have no limit.
IN CALIFORNIA, that has meant no waiting lists for services, which is virtually unheard of in any other state. It has also meant that once someone is in the community, their needs are taken care of because there are a number of venders served by the regional center. But the Republican-controlled Congress is pushing for block grants to the states, whereby that state entitlement would disappear. As a result, the desiccated state budget will have money to allocate, and a lot of groups vying for it.
"The MediCal/Medicaid issue is really troubling to us," says McCue, adding that all of the proposals on the table are cutbacks. "Under none of these decisions will there be the same level of funding. It would cause a mad rush for the same piece of pie."
The moral dilemma continues because, while the regional centers fight for funds, their clients will become increasingly dependent on them as federal assistance to individuals diminishes.
It's a catch-22.
People like Pasquini probably aren't faced with being returned to SDC, but what emerges from funding cuts might not be much better. McCue says that if things get as bad as some predict, the developmentally disabled might be "gathered" into communal settings--a sort of one-stop mini-state center--not totally unlike the larger model. That would be the equivalent of putting people in a group-home bubble in the community, drastically reducing such hard-fought-for freedoms as apartments and work centers.
They'd see a glass wall instead of a glass ceiling.
"It might mean you stay home and receive no services . . . [which means] meals and a bed, but no training," McCue warns.
JEAN WESTON is celebrating one year in her Santa Rosa apartment. She's on the Governor's Area IV Board for people with developmental disabilities; she works at Becoming Independent, an affiliated vender of the North Bay Regional Center; and she helps out with the Live Your Dream Program for people at developmental centers who want to leave. One of the Coffelt few, this active, animated woman has such a busy schedule that her BI case manager, Rita Gatens, has to plan far in advance just to see her.
A resident of institutional settings since she was a young girl, Weston says getting out of SDC is the best thing she's ever done. "I wanted to get out of there a long time ago," she recalls. Among the obvious benefits are time alone, privacy, just one roommate (her personal assistant, Lisa) instead of several, phone access--the list goes on.
"I meet people, do things," she explains. "I wouldn't trade this for nothing."
Living in the "real" world can be scary, yes. "It's very hard to get a good assistant," says Weston, a youthful 58-year-old who is wheelchair-bound and needs help with various things around the house. "We joke around--you oughta hear us," she laughs.
Of course, with so many more people helping out in her life, there's the possibility of losing someone. Life becomes unpredictable. But the flipside is that it's a life of her own making.
"Control. That's what I wanted," Weston answers long after I'd asked her why she left SDC. "I guess it all boiled down to that--personal freedom.
Nancy Gardner, director of the North Bay Regional Center, began work with the developmentally disabled in the mid-'70s. "Back then, they'd get four or five kids in a basement and that was the program," she recalls. "It wasn't until '75 that people with disabilities had a right to a public education. That amazes me."
Things have changed a lot since then. Through the regional center and affiliated venders like Becoming Independent, developmentally disabled "consumers," as they are called, have access to day programs, residential opportunities, respite care, and behavioral consultants.
Individuals don't just get the basic necessities, they also get valuable vocational training.
It's a long way from SDC, as illustrated by one anecdote. "Someone in the developmental center wanted strawberries on their cereal," Gardner says. "They had to spend six weeks to get approval. In the community, you just go buy 'em."
BUT FEDERAL budget cuts threaten the very existence of the regional center system. "California stands to lose $10.8 billion in Medicaid," Gardner points out. Any number of things could happen, including the complete dissolution of regional centers over time. Health care for the developmentally disabled in the state could remain managed like everywhere else, making it very difficult to find a dentist or doctor willing to work with the developmentally disabled, and mini-centers could hold all the services that are available to people.
Ironically, Gardner says, the state regional center system is very efficient, by public and private industry standards. With an overhead of less than 4 percent, Gardner says they've had cuts over the last few years while continuing to increase their consumer base, which is now somewhere around 4,700 people in Sonoma County. While she has nothing against SDC, it's hard to see so much money go to a place that serves one fourth as many people. "They're putting in sprinkler systems and I'm cutting services," Gardner laments.
"What people don't remember is a lot of these people are abandoned by their families," she adds. "I'm afraid they'll slip through the cracks without the regional center system." Conceivably, she says, it could turn back the clock and make state developmental centers the only option.
A sad fact for many with developmental disabilities is that they have family in absentia, meaning family members either aren't able--or willing--to visit. So people in their environment become extended family. Watching Weston and Gatens, it's easy to see that theirs is more than merely a professional relationship. They see each other outside of work, for birthdays and special events, or for nothing extraordinary whatsoever. The opportunities for creating those relationships are exponentially higher out in the world than at SDC.
But community living does have its critics. They argue that life outside is too uncertain and has the potential to harm. A Press Democrat article recently cited reports of problems in group homes and day programs. Gardner points out that the article neglected to mention that those reports were from areas outside Sonoma County, where Coffelt money hasn't gone to community resources.
But McCue asserts that a community-based system could be an enlightened alternative: both less expensive and more humane than developmental centers. With the right planning and backing, he says, there could be even more predictability and control. But these are moot points if Congress pulls Medicaid funds, a possibility that looks likely. Meanwhile, regional centers and their venders are trying to salvage what they can, and get the word out to the voters.
"Taxpayers would be supportive [of fewer cuts]," says Gardner, "if they knew how little we are spending."
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From the June 20-26, 1996 issue of the Sonoma Independent
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