Ventura County, Calif., is home to roughly a thousand children who end up in the tough and disruptive world of foster care. These adolescents live transient existences, sometimes changing homes two or even three times in a year and, as a result, often receive uneven care. But officials in Ventura County have an idea that might help: Give every foster kid an "electronic backpack."
The county announced in June that it will phase in a digital repository of health, education and juvenile probation records for foster youth that will be stored and accessed from one centralized location. While policymakers have sought for years to improve electronic medical records for the general population, the issue is particularly relevant for children in foster care, who tend to suffer disproportionate rates of physical ailments, such as asthma, dental decay and malnutrition. They also develop a dependency on drugs at higher rates than their peers and are more likely to meet criteria for a mental disorder. While their medical needs may be greater, documentation of symptoms or history of care is prone to gaps because foster youth usually live with several families before turning 18. "A foster child might be in multiple homes," Barry Zimmerman, director of human services in Ventura County, said. "With every movement, there's the potentiality of information not carrying with that child."
Because of incomplete medical records, children in foster care often receive duplicate immunizations, get over-prescribed psychotropic medications and are frequently misdiagnosed, according to First Focus, a national children's advocacy group. By creating an electronic backpack, Zimmerman hopes to provide complete, timely and easily accessible information for the range of adults who interact with foster youth, from juvenile court judges to pediatricians. The backpack would also be a boon to young adults who have aged out of the foster care system, but need documents to apply for a job or financial aid at a university.
The first phase of the Ventura County project -- scheduled for completion in 2015 -- will focus on electronic health records, but the system will have the capacity to incorporate data from other public sources, such as local school districts and juvenile courts, in the future. Ventura County is not the first locality to aggregate electronic records of foster youth, nor is it the first to create an electronic backpack.
Congress encouraged states to create electronic medical record systems for foster kids in a 2008 law. Some states, such as Texas and Florida, already have electronic health systems for foster youth. And in the case of Texas, the system is thought to have reduced the number of psychiatric admissions, the length of psychiatric stays and use of psychotropic medications among foster kids. But adoption nationwide has been piecemeal and usually remains focused on the single intersection of child welfare and medical data.
One of the most comprehensive "electronic backpack" programs to date is in San Diego County, where the Office of Education integrated education, health and juvenile probation data for foster youth in 2006. The system receives automated information feeds on a weekly or daily basis from 42 school districts, a juvenile court program, a child welfare agency and a probation department. Those feeds include the foster child's history of family placements, the assigned social worker, medications, grades, school attendance, unofficial academic transcript, results on the English language assessment and the name of the adult who is legally responsible for making decisions about a child's education.
While the information housed within the San Diego system is extensive, not all of it is accessible to everyone. The county decides who gets to see what. That's a common feature in other electronic health systems for foster youth: Security systems restrict access based on what a social worker, caregiver, doctor or educator is allowed to see. For example, a caregiver could see that a child had a therapy appointment, but wouldn't be able to read the therapist's uploaded notes.
The idea of an electronic backpack -- sometimes called a "passport" when dealing only with health records -- is widely perceived as a positive service in the child welfare community. Yet few localities offer it. Part of the reason is cost. In the case of Ventura County, the pilot is receiving most of its funding from two private foundations, the Sierra Health Foundation and the Verizon Foundation. The child welfare agency spends most of its revenue on core services, such as caseworker salaries, which doesn't leave money for technological modernization.
Another reason why aggregated electronic records haven't become commonplace is the lack of coordination and communication across public agencies that serve foster children. "It's a fairly easy and straightforward concept," said Ginny Puddefoot, who works on health IT initiatives for The Children's Partnership, a research and advocacy nonprofit helping Ventura County on the pilot project. "But it's really complex once you're trying to bring together these separate systems that have been in different silos for so many years."