A Changing World for the Developmentally Disabled
by Eve Jacobs
f we can agree that it takes a village to raise our children, then it follows that some in that village will have to lead the way. With violence permeating our globe, mysterious disorders like autism on the rise and the fairly recent recognition that kids with developmental disabilities — and the adults they grow up to be — have the right to be part of the everyday life of
communities, the path of the village leader is strewn with hurdles.
Those in New Jersey concerned about who is minding the kids can rest easier knowing that individuals like Deborah Spitalnik have stepped up to the plate. She would be the first to tell you that despite a career in child
development spanning more than three decades, she has no definitive answers. But that hasn’t stopped her from trying to create a new order and advocating for those who may have difficulty
advocating for themselves. In the most basic Romper Room terms, she is a thinker and a doer.
“I keep learning how to listen better — and so come away with a more accurate understanding of people with developmental disabilities and their families,” she comments.
Among her many leadership roles, a seven-year term on President Bill Clinton’s Committee on Mental Retardation, which she chaired, and her current position as executive director of the Elizabeth M. Boggs Center on Developmental Disabilities in New Brunswick, jump to the fore. But she didn’t follow a straight line to get there. Rather, her career path resembles that of a child moving across a hopscotch board, orderly but not linear.
While an undergraduate at Brandeis University, Spitalnik volunteered at a state institution housing “3,300 people in an overcrowded space,” a place she cannot forget. This first experience with the world of disability left multiple imprints on her brain, but two stand out: a young boy whose cleft lip and palate had never been repaired, but whose speech she nevertheless learned to understand; and “an adult man standing alone under a tree clearly and poetically playing an imaginary violin.” These images have stayed with her through all of her professional life.
After graduating in 1970, she taught kindergarten in an impoverished section of Boston. “There were two sessions, 37 children in each class,” she remembers. “In my school, where the students were black, we didn’t even have enough chairs. The school five miles away, in a primarily white neighborhood, had more supplies than they could use.”
At that time, Spitalnik, now a professor of pediatrics at UMDNJ-Robert Wood Johnson Medical School (RWJMS), began to grapple with some of the larger societal issues, among them “how racism and class influence what is available to people.”
Her Master’s degree from Harvard in 1973 in education and social policy, focusing on community mental health, helped her to recognize “the many similarities in human services settings — how poor people, and children and adults with developmental problems, were not valued by society and were treated badly.”
Spitalnik’s main interest continued to be children. She completed a
fellowship in child clinical psychology at St. Christopher’s Hospital for Children in Philadelphia in 1975, where she did research on children with phenylketonuria and continued working as a consultant in child development for several years.
While working towards her doctorate in clinical psychology, which she earned from Temple University in 1982, she continued to struggle to “understand the social forces that work on people.” Looking backwards at the unfolding of her professional life, a clear pattern emerges. She says the civil rights movement of the 1960s and early 1970s inspired her to draw strong parallels between the treatment of blacks and that of people with mental retardation and other developmental disabilities in our country.
“I began to see the needs of those with developmental disabilities, and those who become disabled, as a civil rights issue. I saw their issues tied in with those of class, poverty and race, which combine to make people more vulnerable,” she explains.
She was very troubled that individuals with developmental disabilities were closeted away, hidden in “special” schools and institutions, and kept behind closed doors, in separate worlds. She felt that as a society we were not dealing with these complicated issues and denying the humanity of these children and adults.
There are meetings that change the course of our lives. There are professional relationships that become deeply personal. There are friends who truly become family. For Spitalnik, Elizabeth M. Boggs, a parent-advocate for people with developmental disabilities, became mentor, friend and family.
Boggs “entered” the disabilities world with the birth of her son David in August 1945, who having received one of the first civilian uses of antibiotics, survived an umbilical infection but became profoundly disabled. “It is almost beyond our imagination what the world was like at that point for parents with a child who was disabled,” says Spitalnik. “There were almost no services of any kind — diagnostic, treatment or educational.”
At the end of World War II, Boggs joined with other parents, creating the New Jersey Association for Retarded Children and becoming a founder of The ARC of the U.S. and its first woman president in 1958. She was one of the first women to earn a doctorate at Cambridge University in England in the late 1930s, but after David’s birth, turned her attention from her career in science to advocacy and policy in
disability, according to Spitalnik.
In 1961, Boggs was appointed by President John F. Kennedy to the President’s Panel on Mental Retardation and served as co-chair of the subcommittee on human rights, which became the President’s Committee that Spitalnik led 40 years later. Boggs also co-chaired a congressionally appointed Committee on Discrimination Against People with Disabilities, whose findings ultimately led to passage of the
landmark Americans with Disabilities Act in 1990.
“One of Elizabeth’s most important contributions was to coin, expand and popularize the term developmental disabilities to include mental retardation, cerebral palsy, epilepsy and autism, highlighting the impact of disabilities that originate early in life and that are persistent and severe,” says Spitalnik. She also contributed to the modernization of the Social Security Act, particularly the Supplemental Security Income (SSI) program to help disabled, blind and aged people meet basic needs for food, clothing, shelter and medical care, and the creation of IDEA (the Individuals with Disabilities Education Act).
But Boggs’ successes did not stop with her role as advocate and policymaker. “Elizabeth took particular delight in promoting the work of younger people,” Spitalnik says. “I was someone she encouraged when I was a young graduate student.” The two met at a conference coordinated by Spitalnik in 1977.
Passing the Torch
Seeds sown by both women over the past several decades have blossomed and borne fruit, changing the world of developmental disabilities in radical ways.
While writing her dissertation, Spitalnik worked with community
programs, including group homes, and helped Head Start serve children with disabilities.
“At the time I trained,” she says, “mental retardation was seen as a condition of childhood. In my 30 years in the field, with better pediatric care, we have seen the children grow into adulthood, many now facing issues of aging. It has been extremely gratifying to have seen so many individuals move out of institutions and into fuller lives in the community.”
The expanded possibilities are at least partly based on more available services and changes in attitudes, those very issues Spitalnik has championed at the local, state and national levels. She is a recognized “mover and shaker” in New Jersey, serving, over the years, on a long list of state organizations, among them the Governor’s Council on the Prevention of Mental Retardation and Developmental Disabilities and the New Jersey Developmental Disabilities Council.
In her work, Spitalnik has translated community needs and her own understanding of how to make changes in service systems, into the professional literature, serving as co-author of the past two editions of the primary Diagnostic Manual in Mental Retardation, which has been translated into 10 languages. She has also made complex policy issues easy to understand bycreating educational materials for Medicaid beneficiaries, families and direct care workers.
But educating health professionals about mental retardation has always been right at the top of her list. “Obstetricians, pediatricians and family doctors need to convey that having a child with a disability will not ruin a family,” she says. “Physicians need to be better educated on what services are available. Early intervention provides stimulation and respite for the families of babies and toddlers. Education
prepares the children for their adult lives.”
The more primary care physicians and specialists know about children and adults with developmental disabilities, the “more hope we can give parents that their kids can have full lives,” she continues.
The Center that Spitalnik heads up at RWJMS — founded in 1983 as a result of a proposal and grant that she wrote — works at many junctures, and touches all aspects of the lifespan. Of course, the ultimate goal is to help prepare children for the transition into their adult lives —to hold jobs and live in the community. What started with her and a secretary has grown to include 30 faculty and staff whose charge is “to build capacity in the community. We try to create a different set of possibilities for these children,” she says. (See sidebar.)
Spitalnik takes great encouragement from the federal Supreme Court Olmstead Decision of 1999, which found that the right to live in the community is a civil right and that people with disabilities should not be segregated
Coming Full Circle
Elizabeth Boggs died in 1996 at the age of 82. Before her death, she asked Deborah Spitalnik, her close friend and associate, to become the guardian of her 51-year-old son, David, who was profoundly disabled and lived in the Hunterdon Developmental Center until his death in 2000.
“It was important to me to be entrusted with this,” says Spitalnik, who willingly agreed to take on this responsibility. “I had been involved in the field as a professional, but this allowed me to sit on the other side of the table. Although I hope I had been
empathetic before this time, it was incredible to understand what it’s like for a parent and to feel how dependent you are on others for the well-being of your loved one.”
Spitalnik, who is married to John Weingart, associate director of the Eagleton Institute for Politics at Rutgers University, is a parent of a 20-year-old daughter, Molly, who is an undergraduate at Columbia University. The family lives on a farm in a still-rural part of New Jersey.
“When you have a child with developmental disabilities, it changes the life trajectory of the entire family,” she states. “For example, it affects the ability to change jobs because of insurance. If the family was dependent on two incomes, what happens when one can’t work because their child needs so much care and supervision?”
“Parents provide full-time care-giving for kids with disabilities long after the age when typical children become more independent,” she continues. “They may still be bathing them and changing their diapers when their children are in their 20s, 30s and older. Even when their children are adults, these parents have to face their fears each day about who will care for their kids when they’re not around.”
Spitalnik says that when she watches her own daughter “move into her independent adult life” or takes a vacation or spends hours on a hobby, she feels an even more profound respect for the parent-caregivers.
“I feel privileged to do this work, which I love so much,” she concludes. “Whenever I feel any frustrations with my job, I think of the parents who are always dealing with their families’ needs and I’m inspired once again.”
Twenty Years & Counting
Last year, the Elizabeth M. Boggs Center for Developmental Disabilities celebrated its 20th anniversary, At a dinner to celebrate the occasion, Deborah Spitalnik, PhD, its founder and longtime director, gave an address entitled Love and Public Policy.
"The title comes from my deeply held belief that unless we act out of love in all endeavors, but especially the human enterprise in which we are joined here, public policy goes awry," she stated.
"We come to this endeavor for myriad reasons. Some of us, through our own disabilities, were born into this, some because our children or our sisters or brothers bring us here. Some of us come out of a sense of social commitment—others more randomly through employment or serendipity," she continued.
"But whatever the pathway that has brought us here, there is a place at the table for all of us." The Boggs Center is part of the RWJMS Department of Pediatrics. Since its inception, it has emphasized a community based, life span approach to the needs of individuals with the full range of developmental disabilities and their families. Training medical students and residents about developmental disabilities and early intervention is a priority of the Center, as well as working with the state to help school districts include kids with disabilities, and to make the school'environment a more positive place for all children.
The Center conducts research and model demonstrations, disseminates educational materials, and provides information. Its many activities - in the areas of community support, early intervention and education, employment and health are guided by a Consumer Advisory Council and partnerships with people with disabilities, families, state and community agencies, and policy makers. For more information, the Website address is: