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Family-Centered Care (FCC) and Patient Safety Thursday, June 21, 2007 12:00 – 1:00 p.m. EDT. Moderator: Erin R. Stucky, MD, FAAP Pediatric Hospitalist Children’s Specialists of San Diego Rady Children’s Hospital San Diego, California.

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Family-Centered Care (FCC) and Patient Safety Thursday, June 21, 2007 12:00 – 1:00 p.m. EDT

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Presentation Transcript

Erin R. Stucky, MD, FAAP

Pediatric Hospitalist

Children’s Specialists of San Diego

Rady Children’s Hospital

San Diego, California

This activity was funded through an educational grant from the Physicians’ Foundation for Health Systems Excellence.
Disclosure of Financial Relationships and Resolution of Conflicts of Interest for AAP CME Activities Grid

The AAP CME program aims to develop, maintain, and increase the competency, skills, and professional performance of pediatric healthcare professionals by providing high quality, relevant, accessible and cost-effective educational experiences. The AAP CME program provides activities to meet the participants’ identified education needs and to support their lifelong learning towards a goal of improving care for children and families (AAP CME Program Mission Statement, August 2004).

The AAP recognizes that there are a variety of financial relationships between individuals and commercial interests that require review to identify possible conflicts of interest in a CME activity. The “AAP Policy on Disclosure of Financial Relationships and Resolution of Conflicts of Interest for AAP CME Activities” is designed to ensure quality, objective, balanced, and scientifically rigorous AAP CME activities by identifying and resolving all potential conflicts of interest prior to the confirmation of service of those in a position to influence and/or control CME content. The AAP has taken steps to resolve any potential conflicts of interest.

All AAP CME activities will strictly adhere to the 2004 Updated Accreditation Council for Continuing Medical Education (ACCME) Standards for Commercial Support: Standards to Ensure the Independence of CME Activities. In accordance with these Standards, the following decisions will be made free of the control of a commercial interest: identification of CME needs, determination of educational objectives, selection and presentation of content, selection of all persons and organizations that will be in a position to control the content, selection of educational methods, and evaluation of the CME activity.

The purpose of this policy is to ensure all potential conflicts of interest are identified and mechanisms to resolve them prior to the CME activity are implemented in ways that are consistent with the public good. The AAP is committed to providing learners with commercially unbiased CME activities.

cme credit

The American Academy of Pediatrics (AAP) is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

The AAP designates this educational activity for a maximum of 1.0 AMA PRA Category 1 Credit™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

This activity is acceptable for up to 1.0 AAP credit. This credit can be applied toward the AAP CME/CPD Award available to Fellows and Candidate Fellows of the American Academy of Pediatrics.

other credit

This webinar is approved by the National Association of Pediatric Nurse Practitioners (NAPNAP) for 1.2 NAPNAP contact hours of which 0.0 contain pharmacology (Rx) content. The AAP is designated as Agency #17. Upon completion of the program, each participant desiring NAPNAP contact hours should send a completed certificate of attendance, along with the required recording fee ($10 for NAPNAP members, $15 for nonmembers), to the NAPNAP National Office at 20 Brace Road, Suite 200, Cherry Hill, NJ 08034-2633.

The American Academy of Physician Assistants accepts AMA PRA Category 1 Credit(s)TM from organizations accredited by the ACCME .

learning objectives

Upon completion of this activity, you will be able to:

  • Describe the relationship between FCC and pediatric patient safety.
  • Recognize the importance of providing FCC when treating Children with Special Health Care Needs (CSHCN), as they are a very diverse population with very individual safety requirements.
  • Educate parents and caregivers about patient safety, and engage them as true members of the health care team.
Steven E. Krug, MD, FAAP

Head, Division of Emergency Medicine, Children’s Memorial Hospital

Professor of Pediatrics, Northwesten University Feinberg School of Medicine

Chicago, Illinois

John M. Neff, MD, FAAP

Professor of Pediatrics

Director, Center for Children with Special Health Care Needs

University of Washington/Children’s Hospital & Regional Medical Ctr.

Seattle, Washington

patient safety and patient and family centered care of children in the emergency department

Patient Safety and Patient and Family Centered Care of Children in the Emergency Department

American Academy of Pediatrics

Safer Health Care for Kids Webinar

June 21, 2007

Steven E. Krug, MD

Chair, AAP Committee on Pediatric Emergency Medicine

Professor of Pediatrics, Northwestern University Feinberg School of Medicine

Head, Division of Emergency Medicine, Children’s Memorial Hospital

patient safety in healthcare
Patient Safety in Healthcare
  • To Err is Human: Building a Safer Health System (Institute of Medicine, 2000)
    • 44,000 to 98,000 die each year in US hospitals due to preventable medical errors
    • An even greater number suffer morbidity related to medical error
    • This is likely a underestimate of the true occurrence of patient safety concerns
national quality forum
National Quality Forum
  • Factors associated with increased risk for medical error in health care
    • Multiple individuals involved in the care of a single patient
    • Patients with high acuity illness or injury
    • Rapid health care decisions under severe time constraints
    • High volume of patients and unpredictable flow
    • Barriers to communication with patients, families and other healthcare professionals
    • Interactions with multiple types of diagnostic and/or treatment technology

Source: Kizer KW. Patient safety: a call to action. A consensus statement from

the National Quality Forum. Medscape General Medicine 2001; 3:1-11.

acep factors placing providers and patients at risk in the ed
ACEP: Factors Placing Providers and Patients at Risk in the ED
  • Overcrowding
  • Complexity of emergency patient and family needs
  • Shortage of healthcare workers
  • Uncontrollable nature of workflow
  • Declining health status of patient populations
  • Language barriers
  • Limited access to primary and specialty care providers
  • Lack of established relationships between ED staff and patients

Source: American College of Emergency Physicians. Patient safety in the emergency

department environment report, 2001. Available at:

patient safety risks unique to children in the ed
Patient Safety Risks Unique to Children in the ED
  • Lack of standardized dosing due to broad range in size → weight-based dosing of medications
    • Increased risk for medication errors (e.g. 10-fold errors)
  • Inability of children to communicate complaints or provide a medical history
    • Children unaccompanied by a parent
    • Poor localization of pain
  • Limited on-going exposure of many ED care providers to ill and injured children
    • Failure/delay in recognizing critical illness or injury
    • Children with special health care needs
iom attributes of high quality care
IOM: Attributes of High Quality Care

Source: Institute of Medicine. Crossing the quality chasm: a new health system

for the 21st century. Washington, DC: National Academies Press, 2001.

iom patient and family centered care and pediatric emergency care
IOM: Patient and Family Centered Care and Pediatric Emergency Care
  • Failure to incorporate PFCC and culturally effective care into ED practice “can result in multiple adverse consequences, including difficulties with informed consent, miscommunication, inadequate understanding of diagnoses and treatment by families, dissatisfaction with care, preventable morbidity and mortality, unnecessary child abuse evaluations, lower quality care, clinician bias, and ethnic disparities in prescriptions, analgesia, test ordering and diagnostic evaluation”

Source: Institute of Medicine. Emergency care for children: growing pains,

Washington, DC: National Academies Press, 2006.

ahrq 20 tips to help prevent medical errors in children
AHRQ: 20 Tips to Help Prevent Medical Errors in Children

#1 - Be an active member of your child’s health team

Source: Agency for Healthcare Research and Quality. 20 Tips to Help Prevent

Medical Errors in Children. Patient Fact Sheet. AHRQ Publication No. 02-P034,

2002. Rockville, MD. Available at:

core principles of patient and family centered care pfcc
Core Principles of Patient- and Family-Centered Care (PFCC)
  • Treating patients and families with dignity and respect
  • Communication and sharing of unbiased information
  • Patient and family participation in experiences that enhance control and independence and build on their strengths
  • Collaboration in the delivery of care, policy and program development, and in professional education

Source: Institute for Family Centered Care. Core principles of family-centered

heath care. Advances in Family Centered Care 1998; 4:2-4.

pfcc conceptual transitions
PFCC: Conceptual Transitions
  • Family deficits  Family strengths
  • Control  Collaboration
  • Expert model  Partnerships
  • Information gate-keeping  Sharing
  • Negative support  Positive support
  • Rigidity  Flexibility
  • Patient/family dependence  Empowerment

Source: Emergency Nurses Association. Assessment of family-centered care

in the emergency department. 2001. Available at:

aap acep pfcc in the ed
AAP & ACEP: PFCC in the ED
  • An innovative approach to health care that recognizes the integral role of the family and is grounded in a respectful and mutually beneficial collaboration among the patient, family, and health care professionals
  • PFCC embraces the concepts that
    • We are providing care for a person, not a condition
    • The patient is best understood in the context of his or her family, culture, values and goals
    • Honoring the context will result in better health care, safety, and patient satisfaction
    • To optimize child’s care, ED providers, parents and the child are all on the same team

Source: AAP Committee on Pediatric Emergency Medicine & ACEP Pediatric Committee.

Patient and family centered care and the role of the emergency physician providing care to

a child in the emergency department. Pediatrics 2006; 118:2242-4.

ed challenges to providing pfcc
ED Challenges to Providing PFCC
  • ED overcrowding and acuity
  • Lack of prior relationship with family
  • Previous patient/family experiences
  • Cultural and social variations among families
  • Language barriers and health literacy concerns
  • Patient arrival to ED without parent/family
  • Unaccompanied minor seeking care
  • Visits related to child abuse and neglect
  • Resuscitation and other urgent interventions
  • Unanticipated death of a child in the ED
opportunities for pfcc in the ed
Opportunities for PFCC in the ED
  • Family presence throughout ED care
    • During clinical decision-making and teaching
    • During invasive procedures
    • Disposition and discharge planning
      • Linkage to the medical home
  • Comfort care
  • Culturally effective care
  • Language translation support
  • Child life & social services
  • ED physical plant design
  • Patient and family input into ED policies
family presence during invasive procedures and resuscitation
Family Presence During Invasive Procedures and Resuscitation
  • Literature base consists primarily of surveys of provider beliefs & practices
    • 60 to 80% of families believe they want to be present during ED care
  • Providers are somewhat less supportive
    • RNs generally more supportive than MDs
    • Senior MDs more supportive than trainees
    • Support decreases with increasing acuity and/or intensity of the procedure

Source: Eppich WJ, Arnold LD. Family member presence in the pediatric

emergency department. Current Opinion in Pediatrics 2003; 15:294-8.

fp what do ed providers believe
FP: What Do ED Providers Believe
  • A frequently offered concern by healthcare providers is that family presence (FP) may result in a delay or disruption of care
    • Reports of FP trials in EDs have not demonstrated this to be a significant concern
  • Oddly enough, healthcare providers who initially oppose FP commonly become fierce advocates after trying it
proponents for family presence
Proponents for Family Presence
  • American Heart Association
  • American Academy of Pediatrics
  • Ambulatory Pediatric Association
  • Emergency Nurses Association*
  • Emergency Medical Services for Children1
  • Published guidelines/courses
    • EMSC FCC Guidelines (2000)
    • AHA CPR Guidelines (2000, 2005)
    • Pediatric Advanced Life Support (2002)
    • Advanced Pediatric Life Support (2004)
    • Emergency Nursing Pediatric Course (2004)
    • Trauma Nursing Core Course (2002)

(1) Emergency Medical Services for Children. Guidelines for

providing family-centered care. 2000.

fp reported benefits for family
FP: Reported Benefits for Family
  • Continued patient-family bonding and connectedness
  • Facilitation of the grieving process
  • Sense of closure on a life shared together
  • Removal of doubt about what was happening to the patient and the knowledge that everything possible was being done
  • A spiritual experience
  • Feeling that they had been supportive and helpful to the patient
  • Reduced fear and anxiety

Source: Guzzetta CE, Clark AP, Wright JL. Family presence in emergency medical

services for children. Clinical Pediatric Emergency Medicine 2006; 7:15-24.

fp benefits for care providers
FP: Benefits for Care Providers
  • Improved clinical-decision making
    • Improved clinical efficiency/ED patient through-put
  • Greater satisfaction with workplace environment
    • Improved patient satisfaction 
    • Lower burn-out/turnover
  • Improved understanding of social, ethnic and cultural diversity
  • Improved awareness of children with special healthcare needs
  • Reductions in medical error and liability risk
    • Are we more careful or deliberate with FP ?
    • Are we better informed abut our patients?
      • This may be especially valuable for special needs children
the swiss cheese model
The Swiss Cheese Model
  • Model for accident causation used in risk analysis
  • Views human systems as successive layers of “cheese” or defenses against error
    • Redundancy helps prevent errors
    • Holes represent defense weakness
  • Some hazards manage to find the holes and bypass these defenses, resulting in losses
  • Is PFCC another “slice of cheese” or defense against medical errors ?

Source: Reason JT. Human Error. Cambridge University Press, 1990

culturally effective care
Culturally Effective Care
  • Delivery of care within the context of appropriate physician knowledge, understanding, and appreciation of all cultural distinctions leading to optimal health outcomes
    • Requires the acquisition of knowledge, development of skills, and demonstration of behaviors and attitudes that are appropriate to care for patients and families from a wide variety of cultural attitudes
      • AKA “cultural competency” & “cultural sensitivity”

Source: AAP Committee on Pediatric Workforce. Ensuring culturally effective pediatric

care: implications for education and health policy. Pediatrics 2004; 114:1677-85.

ed communication concerns
ED Communication Concerns
  • Language translation
    • Interpretation
  • Cultural variations in verbal and non-verbal communication
  • Communication anxiety
    • “Imbalance of power”
  • Health literacy

Performance of a Lifetime

health literacy the silent epidemic
Health Literacy: The Silent Epidemic
  • Definition: Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions
    • 21% of the American Public cannot read the headlines of a newspaper
    • 48% cannot decipher messages with words and numbers, i.e. instructions about a bus route

Source: Institute of Medicine. Health literacy: a prescription to end confusion.

Washington, DC: National Academies Press, 2004

health literacy a barrier to pfcc
Health Literacy: A Barrier to PFCC
  • How many patients understand what we tell them or give them to read?
    • About 52%, according to research
  • How do we know parents understand discharge instructions
    • We often don’t
    • Parents/patients are quite ashamed of low literacy and they are very good at hiding the problem
      • Asking “Do you understand what we’ve talked about?” won’t get you very far
    • We need to hear it in their words
      • There is a big difference between asking “Do you understand” and “Take a minute and tell me what we’ve talked about”
future directions in pfcc
Future Directions in PFCC
  • Education
    • Post-graduate
    • Trainee level
    • Patients and families
  • Advocacy and leadership
  • Research !!
ebm review of pfcc for children
EBM Review of PFCC for Children
  • Cochrane review of literature assessing the effects of PFCC models of care on the outcomes of hospitalized children
  • Study methods – literature search for RCTs, CCTs, etc comparing PFCC to other models
  • Study results – no studies met inclusion criteria – no analysis could be performed
  • This review highlights the dearth of high quality quantitative research on PFCC

Source: Pratt SL, Davis LM, Hunter J. Family centered care for children in the

Hospital. Cochrane Database of Systematic Reviews, 2007.

one example pfcc bedside rounds
One Example: PFCC Bedside Rounds
  • Recommended in AAP/IFCC policy statement (2003)
  • Piloted on an inpatient unit at CCHMC
    • RWJF Pursuing Perfection
  • Issues
    • Teaching
    • Time
    • Confidentiality

Source: Muething SE, Kotagal UR, et al. Family-centered bedside rounds: a new

approach to patient care and teaching. Pediatrics 2007; 119:829-32.

ed patient safety resources
ED Patient Safety Resources
  • Frush KS, Krug SE, AAP COPEM: Patient safety in the pediatric emergency care setting. (in press)
    • Look for this policy statement in Pediatrics !
  • IOM Committee on the Future of Emergency Services in the US Healthcare System: Emergency care for children: growing pains. Washington, DC: National Academies Press, 2006.
  • Institute of Medicine. Crossing the quality chasm. A new health system for the 21st century. Washington, DC: National Academies Press, 2001.
  • Frush KS, Hohenhaus SM (eds). Patient safety in pediatric emergency medicine. Clinical Pediatric Emergency Medicine 2007; 7:213-75.
  • American Academy of Pediatrics:
  • Emergency Nurses Association:
  • Institute for Healthcare Improvement:
  • Joint Commission on Accreditation of Healthcare Organizations:
pfcc resources
PFCC Resources
  • O’Malley P, AAP Committee on Pediatric Emergency Medicine, ACEP Pediatric Committee. Patient and family centered care and the role of the emergency physician providing care to a child in the emergency department. Pediatrics 2006; 118:2242-4.
    • Look for the companion Technical Report -- to be published soon !
  • AAP Committee on Hospital Care. Family-centered care and the pediatrician’s role. Pediatrics 2003; 112:691-6.
  • Guzzetta CE, Clark AP, Wright JL. Family presence in emergency medical services for children. Clinical Pediatric Emergency Medicine 2006; 7:15-24.
  • Henderson DP, Knapp JF. Report of the national consensus conference on family presence during pediatric cardiopulmonary resuscitation and procedures. Journal of Emergency Nursing 2006; 32:23-9.
  • American Academy of Pediatrics:
  • Emergency Medical Services for Children: //
  • Emergency Nurses Association:
  • Institute for Family-Centered Care:
family centered care children with special health care needs and patient safety

Family Centered CareChildren with Special Health Care Needs and Patient Safety

Safer Health Care for Kids

John Neff MD

Center for Children with Special Needs

Children’s Hospital and Regional Medical Center

Seattle, Washington


Gain an Understanding of the:

  • Relationship between Families of Children with Special Needs and their Children’s Safety
  • The Importance of Providing Family Centered Care (FCC) for Children with Special Health Care Needs (CSHCN)
  • The Unique Differences between Mother’s and Father’s in Relation to Safety Issues
  • Understand the Specific Home and Hospital Safety Issues of CSHCN
relationship between families of children with special needs and their children s safety
Relationship between Families of Children with Special Needs and their Children’s Safety
  • Families know their child best and their child’s strengths and limitation
  • Families know the developmental and physical challenges that their child has better than any specific care giver
relationship between families of children with special needs and their children s safety48
Relationship between Families of Children with Special Needs and their Children’s Safety
  • Practitioners know medical and therapeutic needs and related safety issues that should be shared with families as partners
  • Safety must be a shared effort by both practitioners and families
the importance of providing fcc for cshcn
The Importance of Providing FCC for CSHCN
  • Families are the protectors of the child
  • Families have aspirations that their child will reach his or her maximum level of achievement and pleasure through play and interaction with others
  • Families expect that their child will continue to develop at his or her own pace
differences between the mother s and father s role in fcc generalities
Differences between the Mother’s and Father’s Role in FCC(generalities)
  • Mothers tend to be the ones who interact most with health professionals
  • Mothers are the organizers of the health plan
  • Mothers tend to be the protectors
  • Fathers are expected to be the providers
  • Fathers have a special interest in play activities as the child develops; they encourage risk taking
  • Fathers take special pride in child’s development
  • Fathers sometimes feel or are left out of FCC
Important to Involve and Empower both Parents Equally in Safety Issues for the Child with Special Health Care Needs
families should take the lead on safety issues with appropriate professional guidance
Families should take the Lead on Safety Issues with Appropriate Professional Guidance

Practitioners Role is to Coordinate Family Centered Care Understand Specific Safety Concerns and Guidelines for the Child Obtain Input from Child’s Specialty Providers

Family Centered Care is more Difficult to Accomplish but just as Important for non-English Speaking Families
maternal child health bureau 1990 definition of children with special health care needs cshcn
Maternal Child Health Bureau 1990Definition of Children with Special Health Care Needs (CSHCN)

Those children who have or are at an increased risk for a chronic

physical, developmental, behavioral

or emotional condition and who require health and related services of a type or amount beyond that required by children generally

general consideration of safety issues
General Consideration of Safety Issues
  • Physical Conditions – Issues: mobility, weaknesses and strengths, challenges around specific conditions
  • Developmental Conditions – Issues: developmental stages and cognitive abilities
  • Behavioral / Emotional Conditions – Issues: fears and anxieties, judgmental abilities and emotional stability
  • Technology Dependence – Issues: mobility devices, I.V. lines, respiratory support , medications, nutritional formulas
  • Combination of Conditions – Issues: all of the above as appropriate
medical care assumptions
Medical CareAssumptions

Parents and their primary care providers in the medical home will know the child better than the hospital team

Primary care providers can help by empowering both parents to be advocates for their child and by informing the hospital team that the families are knowledgeable

about their child’s needs

hospital medical preparation
Hospital / MedicalPreparation

Parents can work out with their medical home providers to develop a care note book with specific items that will make a hospital experience safer (preferably electronic format)

Parents can bring this care note book to the hospital and be sure that the admitting physicians see it, are familiar with the child and incorporate the material into hospital records and orders.

specific issues hospital home medical care
Specific IssuesHospital (Home) Medical Care
  • Medications, dosages and routes of admin.
  • Formulas and Nutrition
  • Intravenous lines
  • Equipment use
  • Infections
  • Skin care and hygienic practices
  • Special emotional, developmental and physical needs
  • Pain and sedation
contents of care note book
Contents of Care Note Book
  • List of medications, dosages, side effects and reasons for use
  • Equipment information and how it has been adapted for the child
  • Specifics recommendations about child’s vulnerabilities and needs (such as skin, GU, bones, emotional, cognitive, allergies)
  • Nutritional requirements
hospital medical team
Hospital / Medical Team
  • Consider the family to be an integral member of the medical team
  • Incorporate their concerns and specific recommendation on how best to provide care
  • Interpreters should be available for families whose primary language is not English,
hospital medical team63
Hospital / Medical Team

Parents can serve as helpful monitors on the care the child is receiving in the hospital

  • Observe hand washing and other measures to prevent nosocomial infection
  • Check medication dosages and ask questions when treatment measures are not clear to them
  • Speak up about concerns
  • Inform staff about special vulnerabilities and pleasures of the child
nutritional and oral concerns
Nutritional and Oral Concerns
  • Use appropriate foods and position for CSHCN
  • Know about formula contents
  • CSHCN should generally eat at a table and not be walking around when eating
  • Be aware of common small items that should be kept away from child
equipment and electrical safety
Equipment and Electrical Safety
  • Be aware of safety needs of the equipment for the CSHCN
  • Special attention to electrical overload, fires and other electrical accidents
  • Follow carefully recommendations in owner’s manuals
environment home
Environment Home
  • Be sure that the child is appropriately supervised
  • Always be sure that water temperature is appropriate for child
  • Be sure that your local Fire Department knows about the special circumstances of your CSHCN
  • Have available a special bag with medicines
  • Develop an alarm system that the CSHCN can use
  • Keep material near child to assist in escape
positive vs negative reinforcement
Positive vs Negative Reinforcement
  • When we emphasize a safe environment it is often a list of negatives
  • Develop positive ways that we can encourage safe behavior for CSHCN that encourages development of skills, teamwork, and appropriate and risks
follow up with family
Follow up with Family
  • Observations
  • Successes
  • New Concerns
  • Suggestions

(Use Check List for Guidance)

  • Allow families to take the lead on safety planning for their child with as much attention to father’s issues as well as the mother's
  • Provide professional guidance and updated safety information concerning the child’s specific conditions
  • Include safety planning as part of the care coordination process
  • Encourage the do’s as well as the don’ts when providing information and advice
  • Safety Tips for Children with Special Needs:
  • Emergency Preparedness for Special Needs-American Red Cross:
  • Wheelchair Safety in Vehicles -University of Michigan Transportation Research Institute:
  • Adapted Bicycle Products for Special Needs:
  • Playground Safety for Children with Special Needs:

now what some take away points from the webinar

Now What?!?Some take-away points from the Webinar:

Family-Centered Care (FCC) and Patient Safety

June 21, 2007

take away points steven e krug md faap
  • PFCC has become recognized as the standard of practice resulting in high quality and safe care
    • Requires a paradigm shift from traditional care models
  • Families should be present during the entire course of ED care, including procedures and teaching
    • This practice will benefit patients, families and providers
  • Culturally effective care is an essential component of PFCC in all settings
    • Timely access to interpreter services is required
  • Health literacy represents a barrier to effective communication, patient safety and PFCC
    • We need to assure that patient families really understand
take away points john m neff md faap
  • Involve families in hospital safety issues
  • Provide families with information and empower them to be part of the team
  • Encourage families to develop and maintain a transportable care note book that has child’s current health plan
  • Make a special effort to include non English speaking families in FCC
care note book
Care Note Book
  • Visit: