An Initiative to Establish a Standardized Electronic Health Passport
for Children and Youth in Foster Care
Draft Scenario – August 6, 2008
Electronic foster care passports, especially if web-based with tiered access, have the potential to
serve the information needs of a variety of audiences: pediatricians, child psychiatrists, mental health
professionals, attorneys, caseworkers, judges, and others involved in the care of children in foster
care. In foster care, there are often regulations around what kind of health information can be
shared with certain individuals. Most of this is similar to requirements of the HIPAA Privacy Rule,
but there can be some differences, which is why tiered access is recommended. Common scenarios
include:
1. Sick office visit for a newly placed child in foster care who appears at a primary care
pediatrician’s office
2. Well child visit at a new Medical Home due to a new foster placement or a move to a foster
home in a new community
3. Emergency room visit for urgent/emergent care for a child in foster care with no ready access to
a medical home (new placement, inadequate community access)
4. Sharing information from 72-hour health screening exam and comprehensive health admission
visit after initial placement in foster care
5. Tracking of health needs, referrals, medications, and treatments across multiple health care
providers
The scenario described in this document will focus on the first and third examples above to address
the initial visit a child in foster care makes to a general pediatrician or the Emergency Room (ER).
This work may lead to other scenarios that would provide connectivity for others in the foster care
system, including judges, child psychiatrists, case workers, foster care parents, biologic parents,
foster care alumni, etc.
In addition to establishing an electronic health passport, states making use of such a passport would
need to train health care providers on how to access a child’s passport and how to update
information in the passport. An interface with electronic health records systems (EHR) should be
developed to reduce the administrative burden on practices and ER’s and ensure that the most
complete information is included in the passport.
In an ideal situation, the state would capture as much health-related information on a child as
possible at the time that the child enters the foster care system and enter the information into an
electronic health passport database. The passport should be compliant with the Continuity of Care
Document standard developed by HL7 or the Continuity of Care Record standard developed by
ASTM International. Such standardization will allow for transport of the child’s health data between
the passport and the provider’s EHR. Because the health passport has to be useful to child welfare
professionals as well, it must to be written in language that is accessible to non-health professionals.
SCENARIO
A child enters the state foster care system at the point he/she is removed from parental custody. At
that time, the social worker compiles as much health information from the parents/caregivers as
possible. Often, there is little or no information available. In the situation where the parent/
caregiver is unavailable or uncooperative, the child protective worker should attempt to obtain
health information at subsequent contacts. (It would help a lot if caseworkers had standardized
forms –perhaps on the EHR—to go by when collecting such info.) Consent to share health
information is fundamental to obtaining information. The investigating child protective caseworker
should have the parent/caregiver sign a release to enter health information for the child into the
EHR and clearly indicate that it will be shared with health professionals, child welfare, judges,
attorneys etc caring for the child.
A designated staff person is responsible for inputting all information collected from the parents and
all additional health information that can be collected from other sources into the passport database.
Other information sources might include:
 State Medicaid billing information, including past health care providers are identified.
 If past health care providers can be identified, they should be asked to send health data by fax
(or electronically for those with EHR).
 Childcare centers/licensed providers often have brief health summaries that are useful.
 Schools often have brief health summaries and immunization records.
 Immunization registries.
When possible, an appointment is made for the child at their prior medical home. Ideally, the child
in foster care will continue to receive health care through their medical home. If no existing medical
home is identified, or there is a compelling reason to transfer care, an appropriate appointment is
made at a new medical home. The appointment may be made by the foster parent or the case
worker, but should be scheduled within 72 hours of placement. If the practice is a designated foster
care health evaluation site or foster care medical home, the provider’s staff may routinely check an
intake roster to identify new foster care placements . In these situations, the practice staff may
contact the foster parent to set up the initial appointment. In any case, the initial appointment
should occur ideally within 24 hours, but at least within 72 hours. That provider is given a password
to access the child's electronic health passport.
Initial information to be entered into the passport, based on information from the
parents/caregivers, previous providers, the caseworker, the new foster parents, or Medicaid should
include:
 Demographic information
 Active and past health problem list
 Active and past medications
 Birth history, especially for a child under age 5 years
 Diet/nutrition
 Developmental problems
 Respiratory problems
 Other problems that require same-day visit
 Acute illness
 Chronic health problems
 Child abuse/neglect
 Pregnancy
 Mental health disturbance/significant behavior problems
 Immunization records (may also be obtained from school/childcare or the state’s immunization
registry)




Prior tests, ER visits, and provider visits
Allergies
List/chronology of clinic visits (including where, when, diagnosis, treatment plan)
Notes on typical medical presentation for children with special healthcare needs and how the
specialists have suggested they be managed
Children or youth in foster care may come for health care with a caseworker, foster parent, birth
parent, and/or other relative. Ideally, the birth parent attends a health visit early after placement of
their child so the health provider can fill in details of the health history, but this is very unusual.
Most often, the child or youth will be accompanied by a foster parent or a caseworker, neither of
whom may have much health information.
It is possible that a child in foster care will have health issues needing attention before health history
becomes available, despite the best efforts of casework and health staff. Health providers may need
to provide necessary care while continuing to conduct a search for health information. Some forms
may need to be collected in advance from the case workers. Others may be provided by the guardian
or foster parent who brings the child into the office. These forms may include:
 Medical/surgical permission or general medical consent—the caseworker should provide a
consent to treat signed either by the birth parent/guardian or by the commissioner of social
services if the birth parent is unavailable; most foster care agencies have clear protocols for who
may sign a consent to treat. As a general rule, the foster parent does not have the authority to
sign a consent for treatment.
 Privacy policy form
 Consent to release health information—ideally signed so that the health provider can share
health information with other health providers, schools, caseworkers, mental health, childcare
 HIV Risk assessment—This form is standard in some states and is filled out by the caseworker
with the parent/guardian at entry to foster care or shortly after. A positive HIV Risk
Assessment indicates that the child may need to be screened for HIV infection.
 Permission to test for HIV requires a separate consent.
 Emergency treatment may be rendered without a specific consent to treat.
 Any procedure that is non-emergent and requires informed consent requires that consent be
obtained from the appropriate consenting party who has been appropriately informed.
 Emancipated minor laws in many states make exceptions for certain health information—for
example, reproductive health care for an adolescent is often protected information that cannot
be shared with anyone without the express consent of the teen with capacity to consent.
The following table indicates information to be collected during the visit, depending on the type of
visit:
Action
The foster parent or guardian is asked to
complete appropriate developmental
screening tools.
Initial Intake
Visit
Well Child Visit
X
The nurse brings the child to the examination room and collects vital signs.
Heart Rate
X
X
Acute Visit
Weight
Length/Height
Blood pressure (child >/= 3 years)
Temperature
Head circumference (if child is <3 years of
age)
The nurse conducts hearing and vision
screening.
The nurse plots growth parameters.
X
X
X
X
X
X
X
X
X
X
X
X
X
The pediatrician asks about the foster
X
X
parent’s concerns.
The pediatrician asks about the child’s
X
X
concerns (depending on the child’s ability to
communicate concerns).
The pediatrician asks about the child’s medical history:
Allergies
X
X
Medical Problems
X
X
Current and prior medications
X
X
Prior surgery
X
X
Prior hospitalizations
X
X
Newborn history (if the child is < 5 years of
X
age)
Whether the child wears glasses/other
X
equipment
School/child care the child attends
X
X
Behavior concerns (this is very important)
X
Sleep patterns
X
Eating
X
X
Elimination
X
X
Visitation
X
Legal issues
X
Adjustment to foster home, supports foster
X
parent feels needed
The pediatrician conducts a fairly thorough examination. (Fostering Health
[published by AAP in 2005] would be helpful to understand the important detailed
parameters of admission health series, preventive health visits, transition visits in this
population). Screenings include:
Abuse and neglect
X
X
Developmental screening is child is < 5 years
X
X
of age (screening tools may be distributed at
check-in and completed prior to meeting
with the pediatrician)
Lead screening (<6 years)
X
X
Vertically-transmitted infections
X
X
Anemia
X
X
Malnutrition, obesity/overweight
Other screenings as recommended in Bright
Futures
HIV, Hepatitis B & C, and sexually
transmitted infections
X
X
X
X
X
X
At the conclusion of the visit, the pediatrician:
 Prescribes any needed medications/formulas/equipment and provides appropriate education re
identified acute, chronic health issues.
 Offers anticipatory guidance, including education and support for the foster parent or caregiver
on:
o Discipline in the context of complex childhood trauma
o Safety
o Transitions, helping child adjust to foster home, visitation, changes in school etc.
o Establishing routines
 Provides needed forms:
o School/childcare form
o Caseworker health summary in lay language (entered into the health passport so available to
caseworker) that includes
 Diagnoses
 Immunizations
 Tests, treatments and referrals ordered
 Follow-up
 Names, addresses and phone numbers of consultants
 Any additional concerns
 Provides a referral to WIC or other medical services.
 Provides a referral for mental health evaluation.
 Provides a referral for developmental/educational evaluation.
 An encounter summary should be entered into the health passport that includes:
o Diagnoses
o Immunizations provided
o Tests, treatments and referrals ordered
o Names, addresses, and phone numbers of the consultants.
 The AAP Emergency Information Form for Children With Special Health Care Needs.
Following the visit, the health provider should ensure that a complete visit note is entered into the
health passport along with a brief summary in lay language for the caseworker, parents, and older
youth in care.
The admission health care schedule for a child in foster care is as follows:
 Admission Health Screen within 72 hours of placement
 Admission Comprehensive Health Evaluation within 30 days of placement
 Follow-up admission visit within 60 days of placement
The preventive health care schedule for a child in foster care is as follows:
 Every month for a infant up to age 6 months


Every 3 months for infants/toddlers ages 6 months to 24 months
Every 6 months for children/youth ages 30 months to 21 years
Other types of health visits that may occur for the child or youth in foster care include:
 Behavioral health visit
 Follow-up of chronic illness/medications
 Acute illness
 Assessment for alleged child abuse or neglect
 Discharge from foster care
Information obtained during health visits are downloaded to the passport system from the
provider’s EHR or manually entered into the system by practice staff. Communication and reports
to the court and/or legal authorities may be provided as needed. It should be noted that much of
the information collected in the scenario above would be documented in the provider’s EHR and
then transferred into the passport at the conclusion of the visit. Therefore, efforts should be made
to ensure that ambulatory EHRs can support the functionality needed to care for children and youth
in foster care.
The transfer of health information as a child or adolescent leaves foster care is very important.
Children may eave foster care because they are reunified with birth parents/guardians, go to live
with a relative, or are adopted, or age out of foster care. A health care summary should be provided
to the new caregivers, ideally at the time of a discharge health visit so that the health provider can
review health information, ensure the child has all needed medications and equipment, and that
there is a follow-up plan, including a new medical home, if necessary, in place. Additionally,
adolescents may age out of the foster care system and should receive a copy of his/her passport, in
print, on CD-ROM, or via some other electronic storage device. This will help facilitate the
transition to a medical home with an adult healthcare provider. Children or youth may also transfer
to another foster care agency that will require a transfer of health information.
Health care management is an important responsibility of child welfare. Ideally, the foster care
agency has a health care professional who can monitor and track the health of children and youth in
foster care using the passport system as a tool. The medical home caring for a large number of
children in foster care in a community could assume the health care management role. The role of
the health care manager is to ensure that consents are in place the child has a medical home and
receives care according to foster care standards, health information is obtained and shared,
caregivers receive appropriate health education, health care utilization is monitored and tracked for
individual children, and quality of care is monitored.
Additional Information
List of Stakeholders
Pediatricians and other pediatric health care providers
Primary care office staff
Case workers
Judges
Child Psychiatrists
Schools/Daycares
Foster child who ages out of system
Optional tools that might enhance the passport service:
 Calendar for management of appointments with specialists and ancillary providers
 Links to reliable medical information sites for specific chronic diagnoses
 "Journal" page to keep track of pertinent observations about the health status and
behavioral/emotional observations regarding the child in their care
Items to consider when expanding use of the passport beyond the original case scenario:
The child psychiatrist
needs:





Providing information to
judges:



Who is the current pediatrician of record.
What mental health therapeutic interventions have occurred in the
past.
History of psych hospitalizations.
Any current psychotropic medications with dosages
All past psychotropic medications with dosages, dates, and reasons
for use, or discontinuation
The most recent prescriber of these medications
Information may not go directly from the pediatrician’s office to
the judge, but goes via caseworker. Some states may consider this
"ex parte communication" and inadmissible.
Judges need to know (but may not know they need to know) much
of the same information that the caseworker needs to know:
o assessment of current health status and overview of health
problems (define specific data fields):
 medical
 mental health
 developmental
 dental
 educational
o How health problems impact child's life:
 level of severity
 adaptive function
 treatment plan for each problem, including:
 medications
 counseling
o
o
o
o
 developmental services
 etc.
any recommended changes and why
what the caregiver needs to know or do to appropriately
manage child's care at home
prognosis with good care vs not good care
follow-up:
 primary care
 subspecialty care
 mental health
 developmental
 what would need to be in place in terms of health care to
constitute a safe discharge plan
Next Steps:
 Work with COCIT and TFOFC to identify specific data fields to be captured in the passport.
 Work with the AAP Division of State Government Affairs – to identify which states currently
offer or are planning to offer passports
 Work with the AAP Division of Chapter Services to get chapters involved in state passport
efforts
 Convey recommendations to HL7 PeDSSIG and PHR Working Group.
 Convey recommendations to CCHIT Child Health and PHR Expert Panels.
 Reach out to PPI group working on foster care statement to ensure efforts complement each
other. Steve Downs is informatician and Moira Szilagyi is lead author.