Finding Homes - and Much More - for Severely Disabled Children Living in New York City Hospitals

    • October 16, 2015

Originally posted: February 28, 2002
Last updated: October 16, 2015

Position at time of the award: Executive Director, New Alternatives for Children; New York, N.Y.

Current Position: Same as above

A child should be part of a family. That belief drives everything we do at our agency. Just looking at how happy a child becomes in the presence of a family keeps us going.—Arlene Goldsmith, PhD

She has literally saved hundreds of children from growing up in cold, depersonalized settings, and instead, has given them warm and nurturing homes in the community.—Developmental Pediatrician at the Center for Children with Special Needs

In 1981, Arlene Goldsmith already had two decades of social work experience behind her. She had specialized in foster care, and particularly in the de-institutionalization of disabled children. She had written a book, Those Children (Wadsworth Publishing, 1970), a set of case studies of children from inner-city schools and from 1976 to 1979, and had been part of the team that carried out New York State's mandate to de-institutionalize the infamous Willowbrook facility for developmentally disabled children and adults.

The Willowbrook experience shocked her profoundly, and in 1980, realizing she wanted to be more hands-on in providing services, she decided to go back to school and get a doctorate in social work at Fordham University. But she had barely begun her studies in 1981 when she received an invitation that was to change her life forever: she was asked to interview for a position as executive director of a new agency just being formed.

The agency's mission was to help a population she didn't even know existed—severely disabled children who were living out their lives in New York City hospitals, even though there was no medical need for them to be there. "Some of these children were living there eight years past medical need!" Goldsmith recalls, the astonishment still fresh in her mind.

The board of the new organization looked very impressive to Goldsmith, consisting as it did of people from hospitals, physicians, and some very well-known lawyers. But she had twin 13-year olds, was in school, and knowing what she knew about child development she didn't want to get too overwhelmed. On the other hand, she knew that children growing up in sterile institutional wards eventually lose hope of ever leaving, and their hard-won physical and emotional gains slowly slip away. Convinced she could create a better life for these medically fragile children, and at a lower cost, she took the job.

The beginning of her work. Goldsmith fondly remembers the agency's early days. "When I got there, they had nothing," she remembers. "They had $25,000 that they were going to use for the office, and a salary, and whatever." Her first task was therefore to find funding. She and the board got the agency incorporated as New Alternatives for Children (NAC), wrote a funding proposal, and brought it to officials in charge of the child welfare funding streams in New York City and New York State. They expressed disbelief that such children even existed in New York's hospitals, and told her to come back with proof.

Goldsmith went to work, calling people she knew at hospitals, twisting arms and cajoling favors until she had been provided with the names of 100 "hospital boarder" children. She returned to the officials, carrying those names with her.

"'Look,' we said, 'here—Charlie X, in the hospital five years, spina bifida. Mary Jones, in the hospital in at New York Foundling Hospital, five years.'" The officials were stunned. They immediately gave NAC $100,000 in start-up funds.

Goldsmith and her team were elated. They renovated an office in mid-town Manhattan, getting an architect to donate his services. And then, in 1988, they launched their program, helping "forgotten" children, finding them the best medical care possible, placing them in the most appropriate of families where they would have the highest level of support—sometimes with their own biological families, other times with the most appropriate foster families (including kinship families such as an aunt and uncle) or adoptive families—and, at the same time, enhancing these families' functioning so that they could provide an optimal environment for the children's growth and development.

Families are referred to NAC by all of the major pediatric hospitals in the metropolitan area, as well as schools, pediatricians and the Children's Aid Society. They come from widely diverse ethnic and cultural backgrounds, and are predominantly economically disadvantaged.

The children have diagnoses of cerebral palsy, spina bifida, AIDS, cancer, sickle-cell anemia, chronic pulmonary diseases, and other, often-fatal health problems. They are served at NAC by multidisciplinary teams that include at least a social worker, clinical nurse specialist, psychologist, psychiatrist, pediatrician, and an educational specialist. The teams are coordinated by individuals with a licensed master's of social work (LMSW) certification who provide or arrange for services including case management, counseling, referral, provision and coordination of homemaker services, advocacy in welfare, SSI (a federal cash benefit paid to low income individuals age 65 and older, and the disabled), Medicaid, housing, substance abuse counseling, respite care, and legal services, and a 24-hour hotline.

Each NAC child gets his or her own Medicaid card to help simplify and coordinate services and care, unlike many other children in foster care, who have only a Medicaid number associated with a caretaker or agency. This feature, which Goldsmith fought to establish for NAC, allows NAC to take on the most difficult cases, the "budget busters" because the children's reimbursable—but sometimes extremely high—medical costs do not pass through NAC's budget but are paid directly by Medicaid.

NAC offers an astonishing array of services. There are support groups for information sharing and socialization. There are educational services for early intervention, parenting education, and parent-child interaction. NAC's recreational programs include a summer day camp, a Summer Fun program, and special workshops for children, including drama, dance, pottery, horseback riding, and karate. Goldsmith instituted an annual holiday party where Santa gives each child two personalized, developmentally appropriate gifts. There is a food bank, a clothing bank, and a toy bank, as well as financial aid for emergencies or the purchase of special equipment.

NAC's social workers stay with their charges from the moment they enter the program until long after the children are either adopted or returned to their birth families. Many of these activities occur in-house at NAC's beautiful, warm facility in the heart of Manhattan or a satellite facility in the Bronx, but whenever necessary, transportation in special vans is provided for the children and their families. All NAC staff, including physicians, make frequent home visits.

All these services are offered not just to ensure that medically fragile children are not hospitalized beyond medical need, but to open a world of opportunities for them, to give them homes and families in the community, and to support the whole family in reaching their potential.

All this has been achieved at a remarkable savings. While keeping a child in the hospital costs an average of $300,000 per year, the cost of care for a child in a special NAC foster home is currently $46,000. Goldsmith estimates that since 1985, NAC has saved New York taxpayers well over $100 million in hospital costs. In addition, she has made NAC itself a warm, welcoming haven for the children and their foster or biological families.

NAC was in the beginning, and is now, the only agency in New York City whose sole mission is providing comprehensive support services exclusively to hospital boarder children. Through its activities, more than 3,000 medically fragile children have been served. More than 340 have been placed in foster homes; over 106 have been returned from foster care to their biological families; and more than 120 have been adopted—an amazing feat, since it was commonly believed that no one would want to adopt children with overwhelming special needs.

The average time it takes NAC from the point when a child is placed in foster care until the finalization of adoption is three years, compared to the New York City average of seven years. It takes NAC, on average, 16 months to return a child in foster care to his/her biological family, as opposed to the citywide average of four years. Its small caseload allows it to ensure that no one falls through the cracks.

As of 2015, NAC was serving at least 500 disabled children per year, together with their siblings and families. About 75 percent of its annual budget of $20 million comes from government sources. The rest is raised through foundations and private contributions.

Goldsmith’s duties. As head of the operation, Goldsmith's tasks were many. She had to recruit a professional, motivated staff of MSWs. She had to interest top-level specialists in helping NAC's children, and knit together seamless networks of services so that families would not be running all over the city for fragmented pieces of care. She organized a corps of volunteers that today numbers 100. And she constantly comes up with new programs and services to answer the multiple needs of the children and their families.

Most important, Goldsmith has imbued those around her with her own fiery commitment and indomitable spirit. Her belief that no child is too disabled or too ill to live in the community has proven to be infectious, helping NAC to access critical funds and services.

Her willingness to step in personally to do what has been needed has provided the inspiration for those she led as well as those she served. "Nothing is too much," says one of her co-workers, "and everything is viewed as possible."

While running NAC, Goldsmith managed to proceed with her doctoral studies at Fordham. She completed her class work in two years, but it was not until 1992 that she finished her dissertation. The thesis, dealing with the work she was doing with foster parents caring for medically fragile children, won the 1992 Langenfeld Award for the most outstanding child welfare dissertation.

The newly minted PhD donated her $250 prize to NAC for a special purpose: purchasing duffle bags. "I saw something that was so unbelievable to me," she remembers. "That children who were being discharged from hospitals left with all of their belongings, for five or six or eight years, in black garbage bags! It killed me to see that these children would not have a suitcase or a duffel bag or anything, so I ordered 180 big, blue duffel bags with the NAC logo on them.”

“And every time a child leaves a hospital, they get one of those bags. It's got a place for the child's name. It's just little things that sometimes people don't think about—would you want to take your own kid, when he goes to camp or to visit a friend, with a black garbage bag? 'Cause it makes the child feel like he's garbage! 'Cause that's all he has. And I just couldn't stand that."

Winning the Community Health Leader award. In 1994, Goldsmith was nominated for and received the Robert Wood Johnson Community Health Leadership Award. With the award came $100,000, which she used, among other things, to buy new vans for NAC. "Oh, my God, it was such an amount of money!" she says breathlessly. "We had never gotten that kind of money before."

But for Dr. Goldsmith, the award's benefits only began there. "People were very impressed," she recalls. "It gave us so much credibility. It also encouraged my board to make more generous donations—$10,000 here, $15,000 there—it validated the work we had done. It acknowledged that we'd proven that these children can really grow up in family settings, and that families can be preserved. If we hadn't gotten the award, we might not have gotten all these other grants," she admits. "I might not have had as much credibility with the city."

Goldsmith felt overwhelmingly honored, and the excitement of mingling with the other award winners at the ceremony, and at the annual retreats offered by the Foundation, infused her with new energy and enthusiasm. "I always came away with some new idea I could bring back to the agency," she says. In addition, technical assistance from the Community Health Leadership Program (CHLP) allowed her to become proficient in computer and Internet use.

Since 1994, NAC has continued to enhance and expand its programs, its staff, and its budget. Programs now include:

  • A sibling program to enrich the lives of siblings whose needs may have been neglected by families struggling to care for a medically fragile child
  • Partners in Parenting, which offers NAC-served and other families of medically fragile children follow-up counseling and other services after the family is no longer at risk for abuse, neglect, foster-care placement, or their child's re-hospitalization
  • The Post Legal Adoption Network (PLAN), providing case-management, where needed (often due to changing medical or other circumstances), and continuing access to NAC services such as child recreation, support groups, and parent education, for adoptive families once the adoption is finalized
  • Kinship Foster Care Program, which administratively tracks children in NAC's foster care programs who are cared for by biological kin
  • An HIV/AIDS program, under contract with New York City's Administration for Children's Services, supporting the needs of NAC children born to HIV-positive mothers
  • A city-funded therapeutic foster boarding home program, for children with mental health and physical disabilities, offering each child a foster home of his or her own
  • A medical clinic with a developmental pediatrician, 10 nurses and two pediatric nurse practitioners
  • A mental health clinic with three psychiatrists and 10 therapists
  • A New Horizons 9–12 program including group meetings involving parents, to expose high-risk youth to activities promoting skills and education
  • The staff is now more than 350, Goldsmith says, recalling that at first there were only five employees

"I feel very confident the agency could go on without me,” Goldsmith says. “I've hired extraordinarily well." The turnover rate at NAC is, in fact, extremely low for a nonprofit, testament to the employees' motivation and strong commitment.

Catherine Dunham, at that time the director of the Community Health Leaders program, said of Goldsmith, "This is a time when we need all the leadership we can get. Arlene's work to ensure that chronically ill children live their lives in loving homes exemplifies that leadership."

To Arlene Goldsmith, anyone can become a leader, provided they are driven, have a personality that is open and engaging, and a passionate commitment to the work they do. "I don't usually give up," she says. "I really keep trying, and I try to hire people who have that vision as well. You know, the most important thing is, when you get up every morning, you've got to like the job you're going to." If she ever has any doubts, she can find her reward reflected in the faces of the children she serves.

As one of the children put it, "You never know how intelligent someone is until you give them a chance to show you. Just because I may need a little more help than that healthy, beautiful baby over there, it doesn't make me any less beautiful."

Postscript. In 2009, Goldsmith was one of three members of the social work profession inducted into the Columbia University School of Social Work Alumni Association Hall of Fame. In 2010, she was presented with the Foster Care Leadership Award by the Rowell Foster Children's Positive Plan and the Annie E. Casey Foundation for her steadfast commitment to children placed in foster care.

In April 2015, NAC won a $1 million Balancing Incentive Program award from the state of New York. Most of the money, Goldsmith says, will go toward a specially-equipped van that will allow the agency to serve children in all five boroughs.

Looking back in 2015, she noted that “We sent 10 kids to college this year. I have three kids in wheelchairs who have masters’ degrees. The focus here is to treat each of these children as if they were our own.”

RWJF perspective. The Foundation recognized the first 10 RWJF Community Health Leaders in 1993—unsung and inspiring individuals who work in their communities, often among the most disenfranchised populations, to address some of the nation’s most intractable health care problems. The last round of leaders was chosen in the fall of 2012. The program closed at the end of 2014. For more information on the program see the Special Report.