Children's Voice Mar/Apr 2007

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Loyal to a Cause

Terry and Faye Zealand refuse to let children and families with AIDS be forgotten.

By Jennifer Michael

The second floor of the newly renovated firehouse on Academy Street in downtown Newark is open and airy. The walls are painted a deep gold with white trim and hung with abstract oil paintings. Light spills from the tall windows, illuminating the new wood floors and a long conference table with black leather swivel chairs.

Terry Zealand sits on a couch on an elevated platform at the head of the room. The walls on either side of him are filled with plaques displaying award certificates. Photos show he and wife Faye on trips to Russia and Africa, of Terry speaking before the United Nations General Assembly, and of meetings with various dignitaries, including the first President George Bush, Senator Edward Kennedy, and former New Jersey Governor Christine Whitman.

On a sunny afternoon in early October, Zealand rattles off statistics on the impact AIDS has had on New Jersey, with Newark as its epicenter--approximately 40,000 new cases of HIV are diagnosed in the United States each year, and New Jersey ranks fifth among states with the highest number of adults with HIV/AIDS. Fifty-three percent of New Jersey residents infected with HIV live in the greater Newark area. And of the 18,000 New Jersey children who have HIV/AIDS or who are affected by AIDS--meaning their parents have AIDS or have died from AIDS--12,000 live in Newark.

The Zealands have been working for two decades to help children and families coping with HIV/AIDS in Newark and surrounding counties through the AIDS Resource Foundation for Children (ARFC), a nonprofit organization they cofounded in 1985. Over the years, the couple has made it their mission to educate people about the disease and not let it be forgotten.

Today, ARFC's services and facilities are multifaceted and scattered across the Newark metro area. They operate three transitional care facilities for children who are HIV positive or medically fragile in Elizabeth, Jersey City, and Neptune, and their administrative office is in Newark. ARFC has rehabbed 40 housing units and subsidized dozens more homes in Newark, East Orange, and Irvington for families whose head of household has HIV/AIDS. Outreach services for these families include substance abuse and mental health counseling, transportation services, and summer camp.

The Academy Street Firehouse afterschool program is their latest endeavor. Terry Zealand purchased the 100-year-old building at public auction for $92,000 in 1998, using his credit card. The windows of the former central fire station for Newark were boarded up, the roof caving in. Zealand convinced the bank to loan him $1.6 million for the renovations.

The firehouse opened its doors four years ago. Five days a week, 5:00-8:00 p.m., the building hums with kids and teens ages 7-17 who are bused in from around Newark for tutoring, music and art lessons, and a hot meal. All either have HIV/AIDS, or one or both of their parents have AIDS, or AIDS has left them orphaned. About 55 kids participate in the program.

"What we are doing is keeping kids out of the child welfare system," Zealand says. "Our kids are at risk. They are dropping out of school, becoming pregnant, and ending up in the criminal justice system after mom dies. So this is a critical program for them. It keeps them connected. It keeps them in school."

Few programs exist in the United States, he says, for children with HIV/AIDS or orphaned by AIDS. Much of the world's focus is now solely on Africa. "There are no federal dollars for this; there are no state dollars. We don't recognize that there are children orphaned to AIDS in the United States. It's like these kids don't exist."

The cell phone strapped to Zealand's belt rings, interrupting the history lesson on his organization. The caller, from the Robert Wood Johnson Foundation (RWJF), is surveying past grant recipients to see how funding from RWJF has been used--a $150,000 grant from RWJF in the 1980s provided seed money for ARFC.

She tells Zealand RWJF is preparing to distribute new grants through its New Jersey Health Initiatives program and suggests that ARFC apply. The only caveat: Proposals are due in less than a week.

Zealand tells her he'll have to call her back when he has more time to talk. Glancing at the plaques on the wall and around the room at the renovated firehouse, he says he has plenty to tell her about ARFC's work over the past 20 years. As for the available new grant monies, he assures her his proposal will be on her desk by the grant deadline, even if it takes working all weekend to get it there. ARFC has come a long way, he says, but there's more work to do.

A Lifelong Mission

Terry and Faye Zealand never thought they'd be heading their own nonprofit agency. As a young man, Terry believed his destiny was the priesthood, so for 11 years he studied in a New York seminary. Then he met Faye, a former Head Start director, and decided to go into the education field and start a family.

When a close friend of the Zealands, a man who had studied in the seminary with Terry, died of a new disease called AIDS, Terry quit his job as Director of the Collier School, a private special education facility for emotionally disturbed adolescents in New Jersey, and he and Faye founded ARFC in their friend's memory. Two years later, in 1987, they opened St. Clare's Home for Children in Elizabeth, New Jersey, the first home in the United States for young children with AIDS.

"I knew whatever we did, it was going to be a lifelong mission," Faye says. "You can take the man out of the seminary, but you can't take the priest out of the man."

Faye spends most of her time overseeing operations at St. Clare's Home and the two other transitional care facilities. St. Clare's, a brick-front, single-family home with a play set in the backyard and purple impatiens lining the front sidewalk, houses five children at one time. Their cribs line the walls of the three upstairs bedrooms. Downstairs in the living room, ducks, horses, cows, and other farm animals march across the walls in a mural, and five electric baby swings sit next to the couch.

In a rocking chair, Licensed Practical Nurse Sharon Williams holds tiny 4-month-old Tanya* in the crook of her arm. The baby wears fuzzy pink pajamas and has large brown eyes. Williams explains that Tanya is small for her age because she has been on medications since birth. Her mother had AIDS but didn't take antiretroviral therapies during her pregnancy, so now Tanya is taking AZT to prevent possible infection. They won't know for about two years whether Tanya contracted the disease from her mother.

The first baby admitted to St. Clare's Home in 1987 was a 9-month-old girl with HIV who lived just 18 months. ARFC's transitional homes have since cared for at least 940 homeless children with HIV or AIDS over the past 20 years, saving the New Jersey health system millions of dollars, Terry says. These children have included medically fragile children, whom ARFC began admitting eight years ago, although its focus remains helping children with HIV.

On average, children stay at St. Clare's or the other two transitional homes for less than six months before being placed with foster parents or reunited with their birthparents. Finding foster parents to care for the children can be difficult. As the nature of the epidemic has changed--children are living longer with AIDS due to improved drugs--foster parents have had to adjust. "We now need foster parents who can deal with a long-term chronic illness--a lifetime of multiple [hospital] visits," Faye says.

ARFC's staff goes to great lengths to train parents and foster parents how to properly care for the children, Terry explains. Each transitional home has a medical director, a house nurse, on-call nurses, and a house manager. A social worker and a director of nursing also serve all three homes.

While the Zealands have remained focused on the AIDS situation in New Jersey, they have taken their advocacy outside the state and the country. In 1987, ARFC became a CWLA member, and the Zealands testified on behalf of the League before President Ronald Reagan's commission on AIDS. The following year, Terry spoke before the UN General Assembly about the worldwide implication of pediatric AIDS.

During the 1990s, Faye advised parents of children with AIDS in Russia how to care for their children, and Terry and son Kevin, who serves as ARFC's Director of Housing Development and is one of the Zealand's three grown children, spent three weeks in Kenya studying the spread of the AIDS epidemic. In 1992, ARFC provided housing and health care in the Newark area for 30 pregnant, HIV-positive Haitian refugees who had been sequestered at Guantanamo Bay, Cuba, after fleeing their country.

ARFC is currently working with the African AIDS Institute to organize the first international conference on children orphaned by AIDS, scheduled for 2008.

Giving Hope and Pride

"It was just so hard in the beginning," Terry says of the epidemic's early days. "We had kids dying left and right. We've lost some wonderful kids."

Today, drug advancements have increased the life expectancy of people with AIDS considerably, but providing wraparound services for adults living with the disease--many of whom live in poverty and are drug-addicted--and their children is critical.

Terry talks about one mother with AIDS who had six children, lived in a home rehabbed by ARFC, and took part in ARFC's outreach services. Her children were well cared for, but her health was failing, and the children faced being taken by the state and separated. The Zealands intervened, finding an aunt and uncle to serve as standby guardians for the children, then as full-time guardians after the mother eventually passed away.

Today, most of the children "are doing terrific," Terry says, due in part to their regular attendance at the firehouse and ARFC's summer programs. Although one son strayed and is incarcerated, another recently turned 18, is on the honor roll at school, and has found a job as a carpenter.

"The firehouse is a little glimmer of hope for these kids," Terry says, "and if they take advantage of it, they blossom."

Back at the Academy Street Firehouse, the kids will be arriving by bus at 5:00 p.m. Free bus service to and from the firehouse has ensured children's attendance in the program, since most don't have transportation, or at least safe transportation.

The firehouse is located along a narrow one-way street in the shadow of the towering national headquarters of Prudential Financial, one of the program's major funders. A youthful-looking receptionist--a former participant in the firehouse program--buzzes visitors into the main lobby.

The rooms on the first floor are just as bright and airy as the upstairs. The lobby walls are a moss green, and a brass fireman's pole runs from ceiling to floor. The adjacent theater room, with a stage, a donated grand piano, and closets filled with musical instruments, is painted a rosy pink. Artwork by local artists and kids in the afterschool program hangs throughout the building, which also serves as a nonprofit art gallery to raise funds for the afterschool program.

A full kitchen, tables and chairs, and a diner-style counter with stools are located in the basement. A room next to the kitchen holds hundreds of donated books, as well as 10 Apple computers with Internet access, donated by the Rosie O'Donnell Foundation.

Before the kids arrive, student volunteers from New Jersey Medical School begin dropping in. Terry credits them as being instrumental to the firestation's success. According to 26-year-old student volunteer Aisha Phillipson, 25 attend the program regularly to study, talk, eat, and perform music and talent shows with the kids, as well as discuss basic lifeskills with them.

"We've seen their grades improve. We've seen them get really excited about going to college," she says. "It's been a mutually beneficial relationship between the firehouse and New Jersey Medical School."

When a van eventually pulls up to the firehouse door, Annie Chen, the firehouse program's director, and Kevin Zealand's wife, greets the kids as they walk in. They range in age from elementary to high school. "Remember to sign in and check with Mrs. P. downstairs," Chen tells them, referring to Education Coordinator Paquita Mason.

Terry also stands by the reception desk and greets the children. When a slender teenager in gold-rimmed glasses and a baggy striped polo shirt and jeans walks in, Terry pulls him aside and introduces him as "Ali." (The names of the children and teenagers in this article have been changed to protect their identity.)

Ali has been attending ARFC's programs since age 6 and describes the other kids and the volunteers at the firehouse as his family. He's learned to play the piano and has performed for his peers at the firehouse, including in an American Idol-like contest. "They said I have talent, but I need to work on it," he says with all seriousness about his peers' critiques during the competition.

Ali has also worked with the student volunteers, although he has learning disabilities and can't read. He talks about his close friendship with a mentor from the medical school. "She's taught me things about life, about school, about relationships, about what to do and not to do," he says.

Terry explains that by "what to do and not to do," Ali is referring to the advice many of the medical students give the kids about the importance of safe sex. Ali has AIDS, and his mother died of AIDS. He currently lives with his grandmother and an uncle.

Because he recently turned 18, technically Ali is not eligible to continue attending the firehouse program, but Terry has come up with a way to keep him connected. "I call him the mayor of the firehouse. Now he's going to be the chief janitor," Terry explains. He turns to Ali and warns with mock sternness, "I'm going to keep you working. You're smiling now, but you just wait."

Ali smiles from ear to ear and says with genuine pride, "This is my first official job ever. It's so exciting because I grew up in this place." With a contented sigh, he continues, "I've made my way." Terry promises to give Ali a key to the building, and Ali suggests Terry use the walkie-talkie feature on his cell phone to reach him any time of the day, should an emergency arise.

It doesn't take long for Ali to tell everyone in the firehouse about his new job. "That's great Ali," says Music Director Dave Rimelis, "but you're still going to play piano for me, right? Rimelis has been the volunteer music director since shortly after ARFC's inception. A composer and freelance musician who normally charges $60 for private lessons, he collects donated instruments from friends and family and, along with some of the student volunteers, offers music lessons to the kids at the firehouse on Thursday nights at no cost.

"I haven't turned out any musicians, and I've been there for 20 years," Rimelis laughs, "but I have turned out kids who can play something." In addition, Terry gives the kids art lessons on Tuesday nights, and the firehouse invites parents to come on Wednesday nights and participate in other activities with their kids.

Fighting for Funding

Even with all of the firehouse's success, the question of how to keep it running obviously worries Terry Zealand. ARFC can't afford to employ fund development staff, so he spends most of his energy doing the job himself.

In October, Terry was particularly worried about a funding goal he had to reach by the end of the calendar year to support the firehouse afterschool program. "I'm working on it," he says. I'm not worried about it." But he doesn't sound so convinced.

The Zealands oversee a $4.5 million operating budget, including approximately $350,000 a year in private donations, though ARFC's goal is $500,000. New Jersey's Department of Human Services contracts with ARFC to place children in the transitional homes, and the New Jersey Housing and Mortgage Finance Agency partners with ARFC on its housing efforts.

Most of ARFC's wraparound services are covered by a $370,000 annual allocation through the Ryan White CARE (Comprehensive AIDS Resources Emergency) Act, named for the Indiana teenager who died of AIDS in 1990. The federal program is the country's primary source of funding for AIDS and HIV programs.

Even with their slim operating margins, ARFC always seems to pull through, Terry says, even if by the grace of God. Last fall, Congress battled over reauthorization of the Ryan White CARE Act, including debating a proposed change to the funding formula that would increase funding to rural areas where more HIV and AIDS cases are being diagnosed, and decrease funding allocated to urban areas. Zealand actively worked with New Jersey legislators to protect their state's funding allocation. In the end, legislators reached a compromise and the act was reauthorized without causing serious financial harm to New Jersey and New York.

Terry also has not been shy about expressing his opposition to the Iraq War because of the resources it has taken from American children and the harm it has done to Iraqi children. Just before the United States invaded Iraq in 2003, he staged a protest in the lobby of the Marriott Wardman Park Hotel in Washington, DC, during CWLA's National Conference, making signs that read, "No war" and "Bombs kill moms," and circulating a petition against the war.

But inside the firehouse, it's easy to see where his passion comes from. In the basement, the older kids sit around the tables playing a game with a student volunteer who plays pop songs on a stereo and quizzes them about what movies have featured the songs. The smell of their dinner cooking on the stove--chicken, beans, and rice--fills the room. Some of the younger children sit at the countertop doing their homework, while Rimelis comes down periodically to take another child upstairs for a music lesson.

Outside, Newark turns gray as evening approaches, and the city rumbles with the sound of passing trucks, honking cars, and police sirens. Inside the firehouse, things are cheerful, warm, and safe.

As Terry leaves the firehouse to go home for his own dinner, he asks Chen if Ali has told her about his new job, and she assures him everyone knows. In the parking lot, Terry chuckles and says, "I just made that kid's day. I love my job." Where he'll find the money to pay Ali, he isn't sure, but for the time being, he's not worried about it.

Jennifer Michael is Managing Editor of Children's Voice.

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