Seventy-two-year-old Dolores Castaldo presses her palms against her eyes and takes a deep breath. She is bracing to tell about the moment she saw the pit bulls attack her grown son, Sal, in St. Petersburg. "He has a chronic brain disorder, you see, and yet he had to live alone because that"s the way community-based mental health care is structured. So I checked on him every day, and this day, when I turned onto his road, I saw him running down the street, screaming. For a split second I just wondered, "What?" — and then I saw the pit bulls chasing him." She"s talking faster now, her eyes wide open as if she is actually seeing the dogs, not in her memory but here, in this moment, in this room. She sees her son running, and she sees the blood, the awful, red blood, and her arms reach out impulsively to save him once again. "They"d already attacked him once. Blood was running down his face and arms. It was smeared across his shirt. Before I could get to him, they attacked him again, dragging him down and tearing at him. I got out of my car, screaming for help as I ran. Luckily a man heard me. He beat at the dogs until they ran away."
She is silent for a moment, shaking. Her hands clench. When her voice returns, it is fierce, the growl of a tigress protecting her cub. "My son is incapable of fending for himself. He should never have been living alone. What sort of idiots decided people with hardcore mental illness should take care of themselves?"
"Legislators with little or no understanding of serious, chronic mental illness made the decisions that shape mental health care," says Sheldon Wykell. Physically, he"s a huge bear of a man, with graying beard and cynical eyes. Professionally, he"s a licensed clinical social worker in private practice and Executive Director of the Kenner Academy for students with learning and behavioral problems. Sheldon does not suffer fools gladly.
"The legislators were told, correctly enough, that mental illness is a sickness, and that there are treatments. They reasoned, then, that hospitals were prolonging patient stays to increase revenue, so they wrote legislation that basically said, "If people are sick, and you make 'em better, we'll give you money. If you don't make 'em better, we don't give you money.' That reasoning worked in some cases, but," he rolls his eyes in derision, "it utterly failed to take into account that for many serious mental illnesses, like schizophrenia, there is no cure. There is no makin' 'em better. These patients do need lifelong care, and the legislators provide nothing."
For most of the last century, long-term care for the mentally ill often meant a life sentence at a state-run mental hospital. Many of these were nothing more than squalid warehouses where the mentally ill were literally imprisoned. The terrible conditions in mental institutions were frequent fodder for Hollywood thrillers, and enduring images of abusive orderlies strapping patients into straitjackets for shock treatments still stigmatize the mental health care field. It wasn't until the late 1960s, when a new breed of expose TV shows began sniffing out shocking stories in the urine-scented halls of state-run hospitals, that the government was finally forced to act.
Pressured to improve the outrageous state of affairs, politicians came up with the plan for community-based mental health care. No longer would the mentally ill be warehoused in squalid conditions, without treatment, without hope. Instead, the doors of dismal state facilities would be flung open, the patients set free to return to their own communities. There, the goal would be to "transition the consumer" back into normal life. Treatment and supervision would be provided in ever decreasing doses to motivate the patient toward independent living. It was this transitional treatment program that left the son of Dolores and Sonny Castaldo, an adult male with a long history of chronic and serious mental illness, living alone, unsupervised and unprotected.
The incident with the pit bulls marked Sal's 36th visit to an emergency room in a single year: a call to 911, a frantic drive to the hospital, every 10-and-a-half days. "It couldn't go on," says Dolores. "The stress was killing us. I said to my husband, "none of us, not you, not me, not Sal, will survive another year of this.'"
Dolores has been speaking with passion and vigor, but now she moans, her shoulders hunch forward, and tears fill her eyes. "If you haven't been through it," she says with a sigh, "you can't possible understand how cruel the mental health care system is."
Pam R., a caseworker for mentally ill and mentally disabled adults, sees it differently. She admits the new system has its negatives, "but compared to the old system, I see so many positives." Even though she's supportive of the transitional mental-health care system, Pam asked to remain anonymous. "My funding comes from the state," she explains. "If they don't like something I say, it could put my job in jeopardy."
"The new system is still evolving. As it evolves, it becomes better," Pam says. She points out that the new system offers additional safeguards, with more added in the last three years than in the previous 10. More stringent guidelines mean that job applicants submit to federal background checks, job duties are clearly defined and workers are more accountable for their job performance. Pam's caseload, once up to 160 clients, has been reduced to 35, allowing a realistic amount of time to monitor individuals. New regulations require her to contact not only her client, but also a secondary source of information such as the client's parent, to get a better perspective on the client's needs.
Such improvements, Pam says, make the new system a thousand times better than the old, state hospital system. "The new system isn't perfect. We're not doing the best we can with the money that's being spent. We especially need options for care to be allocated according to the individual needs of each patient, instead of by standardized guidelines. But overall," Pam says, "consumers have more options, and receive more and better services than ever before."
Asked how she responds to assertions that the evolving system lets the most seriously mentally ill fall through the cracks, Pam says, "Whenever there is change, there is also loss. It's like war. You know going in there will be casualties. I know I sound crass, but I must be pragmatic. There's a progression we have to go through, and loss is part of that progression. But once we pass through it, the end result will be a far better system."
For Dolores Castaldo, no loss is acceptable. "It's easy to talk about acceptable loss when it's not your child whose life is on the line. I'm only one of thousands of elderly parents that live in daily fear, wondering what will become of our children when we can no longer protect them. The day the pit bulls attacked Sal, I realized I couldn't wait any longer for someone else to change the system. I had to change it myself."
Dolores began telling people about the critical need for a homelike, long-term care facility for people with chronic mental illness. "For a year, I didn't get any encouragement," she says, "then, one day, the first person said, "That's a good idea.' I immediately asked them to be on our board of directors. From that day, the idea began to move forward." Amazingly, little more than three years later, she is standing in front of her dream house, Benedict Haven in St. Petersburg. It is unique in the community, the only nonprofit facility offering permanent housing and 24-hour supervision to the chronically mentally ill for as long as the resident wishes to stay, even if that is a lifetime. It houses six schizophrenic men. One of them is her son.
For those familiar with the assortment of residential facilities available to the mentally ill, their first visit to Benedict Haven is often a jaw-dropping experience. Nothing inside Benedict Haven indicates this is a health care facility providing 'round-the-clock care for individuals with severe and persistent mental illness.
It is, in every aspect, a beautiful home. A large, airy kitchen and dining room overlook the expansive living room. An airy screen porch floods the front of the house with sunlight. Comfy recliners invite the residents to relax and watch television, but no one sits in front of the tube today. Today, the men are out on one of their many planned activities, anything from visiting parks and zoos to attending baseball games. The back of the house holds six private bedrooms, and no more than two people share a bath. There's also a meeting room, a small business office and a private phone room complete with comfy couch so residents can sprawl out when they place calls to friends and family. It is altogether so ordinary a family home as to be amazing.
Although Benedict Haven is licensed as a residential treatment facility, it sets itself apart from other such facilities in two ways: first, by offering a 24-hour continuity of care in a permanent abode for as long as the resident wishes to remain, and second, by operating as a family home. "We don't so much admit residents as we adopt them," says Dolores. "My first priority has always been that this be a real home for the men, and that they have a chance to come together as a real family, not simply as patients in a health care facility," she explains.
That family atmosphere is encouraged by keeping the men involved in everything from planning the week's meals to reading the daily newspaper aloud. "Maintaining this type of atmosphere calls for an extra commitment on the part of everyone on our staff," says Dolores, "but we've been extraordinarily lucky in attracting compassionate people that share our vision and our devotion to maintaining a loving, respectful atmosphere."
The residents say they have blossomed in this environment. "The guys," as the residents of Benedict Haven are called, enjoy giving first-time visitors the tour. Robert is a beefy 52-year-old man who traces his mental illness to a heart attack that triggered a massive seizure when he was 20. He proudly shows off his collection of books on Tibet. He barely remembers all the mental health facilities he's passed through in just the last 12 years. He does, however, remember the degradation of being treated as if he were mentally impaired, rather than mentally ill.
"I have a mental illness," he says, "but I'm not stupid." Asked what he likes best about living at Benedict Haven, Robert says, "The best thing is that here I have credibility. I don't have to worry about how I come across. The people at Benedict Haven know I have a problem, and they accept me." He speaks about the importance of the balance his new home strikes, between structure and freedom. His medication is strictly monitored, for instance, but he has both the freedom and the responsibility to choose when and how he'll have his hair cut. He's provided with three meals and two snacks every day, and he helps plan the weekly menus. He's provided with a structured activities program but can choose to retreat to his private library when he prefers. "Life is vastly better for me here, in every way. Here I have stability, I have respect and — really important — I have good home-cooked meals!" he says with a grin.
"When it comes to caring for people with serious, chronic mental illness, Benedict Haven could be a role model for the nation," says Sheldon Wykell. When she hears this compliment, Dolores Castaldo nods. "People are coming from all over the country to look at our program," she says. A letter from Mary Zdanowicz, executive director of the Treatment Advocacy Center in Washington, D.C., to Castaldo says, "It was truly uplifting to see what you have done." State Rep. Frank Farkas sent a letter saying, "Your facility was impressive. It lays to rest the misconceptions that all assisted living facilities are made up of neglectful staff and are of poor quality."
Dolores would love to sit back and bask in the glory of having founded a facility being hailed as a role model, but she's too busy working to secure what's already been accomplished. First on the list: improving finances. Income from the residents, which comes from Social Security Disability, covers little more than one fourth of the funds needed to operate their home. The rest, a whopping $144,000, is acquired by begging.
Dolores Castaldo's days are filled with a never-ending round of visits to civic organizations, to churches and local businesses where she pleads for everything from grant money to fresh vegetables for dinner. (As this story went to press, Benedict Haven was awarded a $40,000 operating grant from the State of Florida Department of Children and Families for November 2001-November 2002.) Right now, her most pressing need is to find refinancing for a special low-rate mortgage that comes due next year.
After one particularly long day of pounding the streets, Dolores collapses into a chair and acknowledges she's feeling every one of her 72 years. "Sometimes I get so tired I wish I could just walk away." She sighs, then immediately makes plans for tomorrow. The dollar amount she seeks represents a substantial sum to Benedict Haven, but it's barely a drop in the bucket compared to what the government spends on the two systems where the majority of mentally ill people wind up — the transitional system and the prison system.
In an article in The Washington Post, Steven Leifman, a county judge in Florida's 11th Judicial Circuit Court, says, "States have continued to close psychiatric hospitals at alarming rates without providing the laws and services necessary to provide community-based treatment. In reality, our jail has become the public psychiatric hospital for our community."
The statistics are staggering. By 1998, according to a U.S. Department of Justice report, there were nearly five times more mentally ill people in America's prisons and jails (283,800) than there were in all of the state psychiatric hospitals combined (fewer than 60,000). A 1999 Justice Department report stated that 16 percent of state prison inmates, 7 percent of federal inmates, 16 percent of people in local jails and 16 percent of probationers have reported a mental illness. Leifman cites incarceration, homelessness, suicide, victimization and violence as the symptoms of our failure to address the real needs of people with mental illness.
Leifman is only one of a large number of experts warning the state Legislature about the inherent cost and danger of failing to provide adequate services to the mentally ill. Nonetheless, the closing of long-term state facilities continues.
Arcadia's G. Pierce Wood Memorial Hospital is one of only four remaining public mental health hospitals in Florida. Its 382 beds serve 16 counties, including Pinellas, Hillsborough, Sarasota and Manatee. G. Pierce Wood is scheduled to close in April. When that happens, responsibility for care of the patients housed there, the majority of whom are severely psychotic, reverts to community centers offering only temporary care.
Faye Barnette, executive director in Tallahassee of Florida NAMI (National Alliance for the Mentally Ill) predicts that community facilities, many of which are already overburdened, will not be prepared to meet the expanded need. "We not only do not meet the needs of people already receiving some form of community mental health, but we do not allow for the increasing needs in a state that continues to grow," she says.
From her vantage point in Tallahassee, Barnette is keeping a close eye on government business but holds out little hope that it will be anything other than business as usual. "The (State of Florida) Department of Children and Families has a plan for redesigning the state community mental health system," she says, "and so far the Legislature has funded this plan. The question is, will they continue to appropriate funds in the coming years. History indicates that mental health programs are started and run for a couple of years, then funding disappears and services dry up. This has been the problem in Florida."
Sheldon Wykell says that if politicians keep cutting mental health services, the results will be ugly. "When G. Pierce Wood closes," he predicts, "the community will be flooded with seriously, chronically, mentally ill people, many of whom are treatment-resistant. These are people who are not capable of caring for themselves, who are not capable of taking their medication on schedule, not capable of making good decisions. Many of them will wind up living on the streets, and believe me, their behavior is going to alarm people."
NAMI reports that only 5 percent to 7 percent of people with a mental illness need to be institutionalized; most can live in the community with "appropriate, supportive housing." It is that percentage of the population that Dolores Castaldo worries about most. She knows from experience that the level of services available to these poor souls is neither appropriate nor supportive. It doesn't have to be like this, she says. "We're proving right here that there is a better way, better for the chronically mentally ill, better for the community, better for the taxpayer," Dolores says, her eyes flashing. "There is a clear and critical need for the type of care Benedict Haven is providing. We wouldn't deny people with chronic heart disease or chronic pulmonary disease the structured, long-term health care they require. It's time we started treating chronic mental illness the same way. How can we begrudge the cost of basic decency?"
Bonnie Boots is a freelance writer living in St. Petersburg and Weekly Planet's former food editor.
This article appears in Jan 9-15, 2002.