While touring Newark’s United Hospital’s pediatric AIDS floor, my wife Faye and I met a 2-year-old girl who was HIV-positive. The girl, whose mother had just died from HIV/AIDS a month prior, had no one to bring her home. An aunt had taken in the girl’s sister. But the family member was afraid of the disease, like many people during the early years of the epidemic. It was at this time that Faye and I decided to provide a home for children with HIV/AIDS. The image of that little orphaned girl in the hospital helped to shape the focus and mission of our nonprofit, the AIDS Resource Foundation for Children (ARFC).
Faye began volunteering at the hospital in Newark. She became the “play lady,” visiting the hospital two to three days per week and bringing toys and games for the children. Meanwhile, I began to look for a building that could serve as a home. We had no money or funding support at that time, only pure determination to make our mission a reality.
After a year and a half of searching, we met Sister Elizabeth Ann Maloney, SC, who was the president of St. Elizabeth’s Hospital in Elizabeth. She offered us the former caretaker’s house, which was across from the hospital. With the help of many volunteers, including members of the American Federation of Labor and Congress of Industrial Organizations (AFL-CIO), we renovated the two-story brick structure into what was to become the first home for children with AIDS in the country: St. Clare’s Home.
Our first child came on May 17, 1987. We hired nurses and trained child healthcare workers. With assistance from many community members, St. Clare’s Home provided loving care to children with HIV/AIDS who were boarding in hospitals throughout New Jersey. As the challenges of living with HIV grew, so did the services of the AIDS Resource Foundation for Children. We were asked by the Division of Youth & Family Services (DYFS) to open a St. Clare’s Home in Neptune and Jersey City. Those facilities opened in 1990 and 1998, respectively.
By the mid-1990s, the incidence of children born HIV-positive had decreased, and St. Clare’s Homes began to offer services to infants and children with all types of specialized medical needs. Caring for medically fragile children brings unique challenges. Some of the common diagnoses of the children in our care now include autism, drug exposure or Hepatitis exposure at birth, fetal alcohol syndrome, abusive head trauma (shaken baby syndrome), cerebral palsy, pre-maturity at birth, feeding intolerance, failure to thrive, pulmonary and congenital heart disease, developmental delays, kidney and liver transplants, cancer and other chronic conditions.
In continuing the mission to serve children and families impacted by HIV/AIDS, the AIDS Resource Foundation for Children also began providing community-based services in Newark. As it continues to today, St. Clare’s Social Services started granting case management, emergency assistance, mental health services, addiction services and housing in an effort to enhance the quality of health and well-being of HIV-positive children and adults.
In 1990, the AIDS Resource Foundation for Children opened St. Clare’s Summer Camp. The camp is offered to children and families impacted by the challenges of HIV/AIDS. Supported by private donations and volunteers, St. Clare’s Summer Camp has served more than 2,000 individuals. At camp, children are able to ride bikes, swim, laugh, sing and live in an inclusive environment while strengthening familial bonds.
ARFC also started an initiative to serve youth affected by HIV/AIDS. The ARFC purchased an historic firehouse from the city of Newark and created the first single location in New Jersey to address the specific educational, social and medical needs of children and adolescents dealing with the loss of a parent due to AIDS. The firehouse program enhances the lives of young participants by aiding them in receiving a high school diploma and preparing them for life after high school, whether that means thriving in college or the workforce. The program also empowers youth to engage in healthy lifestyles, including by making mental health services available to youth and exposing them to the arts. In addition, ARFC provides a summer work apprenticeship program and volunteer opportunities.
Committed to finding family-based solutions to problems associated with the HIV epidemic, ARFC created the St. Clare’s housing program to address an important need for families dealing with HIV/AIDS in under-served communities. With support from local government agencies and other community stakeholders, ARFC began providing rental and utility assistance to its Essex County clients in 1992. In 2009, ARFC embarked on a noteworthy expansion of its supportive housing program to homeless individuals and families impacted by HIV/AIDS, bringing 30 units of supportive housing to Newark. Today, ARFC is the largest provider of supportive housing to the HIV-impacted population in New Jersey.
Last year marked the 25th anniversary of the AIDS Resource Foundation for Children. The time has flown by, and thousands of people have participated in the resources offered. Faye and I continue to look to the future and to a younger generation who are assuming leadership roles in the organization. We are able to look back with pride in our accomplishments and look forward with hope to what is yet to come.
For more information on the AIDS Resource Foundation for Children, log onto www.aidsresource.org.
