KEEPING TRACK: A sample of records being compiled by the Westchester Institute for Human Development.
At the Westchester Institute for Human Development in Valhalla, N.Y., child welfare specialists are collecting medical information on 1,000 foster kids in an ambitious project that would fulfill a longstanding dream to improve their health care.
The staff is using the information to create electronic medical records for each youth on a computer server. When one of those children visits a doctor, the doctor can access those records and even update them. When a foster child moves, the staff can download the medical records onto a portable flash drive, creating a “medical passport” that gives future foster parents, doctors or agency directors up-to-date health information.
While this specific approach to medical passports is new, the concept is not. The notion of storing such basic information as immunization records and birth histories on one mobile form of media has been around for 20 years, but child welfare organizations are finding it difficult to make the idea real.
New York State, Los Angeles County and Texas are leading the charge to deploy state-of-the-art passports, through efforts that show both the benefits and the impediments.
“Passports are far harder than people think, and it’s only a first step,” says Sheryl Dicker, former executive director of New York Permanent Commission on Justice for Children.
No one disputes the need to give doctors, case workers and foster parents better information about the medical histories of youths in their care. Foster youth “often enter the system with little or no health information,” Dicker says.
More than half of young children in foster care suffer serious physical health problems, and more than half experience developmental delays, according to “Improving the Odds for the Healthy Development of Children in Foster Care,” published in 2002 by the National Center for Children in Poverty (NCCP).
Giving them proper medical care, however, poses special challenges. The frequent, unplanned moves of foster youth, along with missing or incomplete historical health records, can exacerbate health problems and make it difficult for physicians to provide appropriate treatment. Nearly half of foster care providers in Texas never receive medical histories for children in their care, according to “Forgotten Children: A Special Report on the Texas Foster Care System,” published in April 2004.
“A new foster parent may bring a child into the clinic with a persistent cough, but may not know how long the child has had the cough,” says Dr. Ingrid Allard, pediatrician and medical director for child welfare services at the Westchester Institute for Human Development. “Without that information, it’s difficult to determine if the condition is an infection or asthma. If I have a health history that shows a chronic cough, I can treat the condition more aggressively.”
Missing histories can also translate into missed vaccinations and medications.
The NCCP policy brief recommends that child welfare organizations create monitoring and tracking mechanisms to ensure that youth get health, developmental and mental health services. For some, the digital passport seems to be a solution.
That’s why, in 2005, Texas enacted the Child Protective Services Reform Law, which requires child welfare agencies to use medical passports and provides $500,000 to establish electronic medical passports for the 25,000 foster children in the state. Funding is wrapped into a statewide HMO bid for medical services for foster care.
“We’ll know kids’ health needs,” says Susan Craven, executive director of Texans Care for Children. “They won’t miss medications or repeat vaccinations, which is a health benefit and a cost savings to the state.”
Despite such promise, passports present technical and research challenges, as well as issues of confidentiality and consent.
First, obtaining health histories for foster kids can be time-consuming or just impossible. Los Angeles County’s 6,000 social workers try to obtain birth records to include in the state-mandated Health and Education Passport (HEP), but Dr. Charles Sophy, medical director of the Los Angeles County Department of Children and Family Services (DCFS), admits it can be a “wild goose chase.” In many cases, the HEP does not include such items as previous injuries or dental care, because parents don’t provide the information to the public health nurses or case workers who create the passport for each youth.
There are other challenges. Passport developers, such as HMOs, need to be educated about the nuances of foster care and make sure the passports comply with state and federal laws governing medical records and youth in child welfare. For instance, the passport should protect patient privacy by restricting access to the passport to individuals who have approval to view the records. Approval is typically given by a guardian, such as birth or foster parents.
New York illustrates the struggle to implement the concept. The state mandated passports two years ago, but most county child welfare agencies haven’t complied, says Wendy Breitner, director of child welfare services for the Westchester Institute for Human Development.
Westchester County is coming close. The county hired an electronic medical records vendor to develop a passport for 400 children in family foster care and 600 in residential group homes. Breitner and her colleagues are obtaining health histories, birth records and developmental assessments to create the electronic medical record on the server.
If a foster parent or caseworker needs all or part of the medical information, institute staff can download data onto a flash drive or provide a printout. Appropriate medical providers will be able to access the data through the Internet.
California may have the longest history with medical passports, having run HEP for foster kids since 1999. Sophy explains that when someone enters the child welfare system, public health nurses and social workers input health and education information into an electronic file.
But HEP is not a comprehensive record. Sometimes information is not provided or available when a youth enters the system. And updating the HEP is tricky, because foster youth don’t get all their medical care at public health facilities. “If it doesn’t pass through the hands of our staff, it doesn’t make it into the record,” Sophy says.
Two years ago, Sophy’s department launched a hub program consisting of six medical centers for Los Angeles County’s 23,000 foster kids. The centers provide physicals, mental health screenings and follow-up care. Because the centers cover a significant portion of health care for foster kids, their use makes the passport program more thorough in the information it gathers.
Some say they can achieve the same objectives without passports.Take the ENHANCE Program at Upstate Medical University, in Syracuse, N.Y., which has provided a one-stop shop medical home for all foster children in Onondaga County since 1991. The program offers multidisciplinary health care, including primary pediatric care, mental health screening and developmental testing for the county’s 500 foster kids. It also arranges visits to other providers.
After each visit, ENHANCE sends a record of the visit to the county department of social services. Case workers also secure prior records and track summaries of other medical treatment, such as visits to emergency rooms, to create a comprehensive record of kids’ health histories.
Even advocates of medical passports stress that they are a process, not a solution. The most effective programs use passports as a building block for good medical care.
“Passports are a lot of work,” admits Sophy in Los Angeles. “But kids leave the system with a record of their lives, which is what they really need.”