On a cold Christmas weekend in Wisconsin, Linda and Craig Campana were called upon to care for Timothy, a two-month-old baby boy born prematurely to a mother who was unable to care for him. As with many premature babies, his medical condition was precarious and his future unpredictable.
At the hospital, the Campanas learned how to feed Timothy, who needed extra help even as an infant, and with his challenges in mind, they took a class in CPR. Then they took him home, without any more knowledge about how to care for a child who might have significant disabilities.
“All I can remember was just how little he was. We took pictures of him with our son Corey,” said Linda Campana, recalling in an interview with National Public Radio her family’s first days with Timothy. “And he was just so little.”
Less than a year later, the extent of Timothy’s disability, cerebral palsy, started to become clear. He continued to have trouble breathing, and his physical growth and cognitive development were delayed. The Campanas did not know where to turn for help. “It took a lot of us educating ourselves about what resources are out there and which programs to get him on lists for,” said Linda Campana, noting that their social worker was unable to provide much information, as Timothy was the first child with a disability she had assisted.
Far from unique, Timothy’s story represents the rule, rather than the exception, for most American foster families of children with disabilities, according to a new report by the organizations United Cerebral Palsy and Children’s Rights. The analysis, titled Forgotten Children: A Case for Action for Children and Youth with Disabilities in Foster Care, examines how foster care systems serve children and youth with disabilities. It reveals a crisis largely overlooked by state and county foster care systems: At least one-third of the more than 500,000 children and youth in American foster care today likely have disabilities, but foster care systems have largely failed to address the unique needs of children with disabilities and the families who care for them.
“Our investigation has found that the special needs of children with disabilities are often entirely forgotten, though they represent a significant segment of all children in foster care. The very systems intended to protect children in crisis were simply not designed to identify, assess and manage the physical, emotional and cognitive disabilities of children with special needs.” said Stephen Bennett, president and CEO of United Cerebral Palsy.
Last year, United Cerebral Palsy and Children’s Rights, two national organizations with expertise in advocacy for people with disabilities and children in foster care, joined forces to tackle a problem both identified as para mount. The agencies examined a range of research and academic literature in a first-ever review of how foster care systems serve children and youth with disabilities. As they went to work, the report’s authors found that all foster children were exposed to significant risk factors for disability.
“Children and youth in foster care are exposed to remarkable risk factors for lifelong disabling conditions. Whether due to abuse or neglect or a lack of access to appropriate health care services, all foster children encounter a number of significant challenges to their healthy development,” said Sara Munson, policy analyst at Children’s Rights and the primary author of the For gotten Children report.
Children who enter foster care, on average, have already experienced more than 14 different environmental, social, biological and psychological risk factors, according to the report. A full 80 percent may have been prenatally exposed to drugs, alcohol or other substances, while 40 percent may have been born prematurely or at a low birth weight.
Once in the foster care system, children with disabilities can face a full range of systemic problems that prevent positive life experiences. Caseworkers lack the tools to identify and assess disabilities, foster parents lack even basic information about the special needs of children placed in their homes, and children cannot access comprehensive health care services to address their special needs.
Tammy Loller, a single foster parent in Indiana, knows these problems all too well. Last year, her caseworker called in the middle of the night and asked her to take a two-year-old child who could not stay in the care of another family because he had a cold. The young boy, in fact, had serious disabilities, including a developmental delay of 18 months and emotional disabilities that led him to harm himself. In addition, he had great difficulty communicating, which intensified his already challenging behaviors.
With little access to information and resources, Tammy struggled to understand her new foster son’s disabilities. A working, middle-class mother, she had little experience in caring for a child with such significant needs. “It was a big deal just to get him to sleep,” she said, remembering the first days after he had come home. “I would be lucky to get him down before 1:00 am, and he always needed constant attention and supervision.” Most of all. Loller felt adrift in a system that had not prepared her for her responsibilities. “I had to find help on my own, and that was probably the toughest part-not getting more support from my caseworker and the foster care agency. I really wanted the best for this little boy.”
Marcia Robinson Lowry, founder and executive director of Children’s Rights, knows that these systemic issues lead to worse outcomes for children and youth with dis abilities. As the Forgotten Children report makes clear, children with disabilities are more likely than other children in foster care to be abused, neglected and institutionalized, as well as to experience poor educational outcomes and achieve lower rates of placement with permanent families. “Whether they experience abuse that results in disabilities, or are victims of abuse because of their disabilities, children with special needs in foster care are dangerously at risk,” said Lowry.
Despite the dire situation faced by many children with dis abilities and the foster families who care for them, Forgot ten Children also identifies several promising approaches accepted by many national medical and advocacy organizations. The two agencies say foster care systems should adopt health care standards, ensure timely and thorough evaluations of children, manage records more effectively, increase specialized services, improve training programs for parents and caseworkers and collect and analyze data on disability status, services and outcomes. “If fully implemented, adequately funded and universally accepted by states, these recommendations could dramatically improve the foster care experience for children and youth with disabilities,” said Janna Starr, director of Disability Rights Policy at United Cerebral Palsy.
Additionally, community-based organizations can take a lead role in creating change. Some, working with their state foster care systems, have successfully built the capacity to recruit and train foster parents for children with disabilities. The North Carolina affiliate of United Cerebral Palsy, for example, has merged models of foster care to create an effective resource for families in North Carolina. This statewide affiliate not only recruits and trains foster parents to provide family-based placements for children with disabilities in foster care, but also collects community volunteers for short-term stays and respite care for birth families in crisis. More than 200 families in North Carolina are trained and prepared to care for a child with a disability. The agency then provides the children with community-based services such as early intervention, physical and occupational therapy and family supports. As a result of the agency’s comprehensive approach, many children and youth with disabilities are able to remain with their natural families for the long-term, while others receive the specialized care they need in foster care, and others are adopted by loving and informed families who have the support of their communities. Such efforts, however, take time. community support and financial resources.
United Cerebral Palsy and Children’s Rights, in a collab oration that began in 2004, are working hard to identify and try different service delivery approaches to help children with disabilities, as well as to develop policy and legal strategies to address the larger systems issues that negatively affect their safety, well-being and opportunity to grow up in permanent families. The two organizations plan to release a state-by-state report card on foster care systems and disabilities next year and are examining opportunities to use the legal system to improve foster care for children and youth with disabilities.
by Jim Baker
To read the full report, Forgotten Children: A Case for Action for Children and Youth with Disabilities in Foster Care