Health Care Reform and the Opportunity to Implement a Family-Centered Medical Home for Children

The passage of the Patient Protection and Affordable Care Act (PPACA) formalized the concept of the medical home and primary care as a vital part of effective health care delivery. The PPACA comes closer to providing universal access to care and seeks evidence-based models to improve maternal child health programs such as home visiting, Emergency Medical Services for Children, and community health teams in support of the medical home system of care. Implemented correctly, the critical components of an integrated system could evolve to improve quality, efficiency, and cost-effective care that allows appropriate payment for a model of optimal health care delivery. It may be instructive to review the roots of the medical home concept and its application over decades as the family-centered medical home (FCMH).

The term medical home was introduced by the American Academy of Pediatrics in 1967 to specify a repository for medical records.¹ In Hawaii in 1986, through a Maternal and Child Health Bureau SPRANS grant, a medical home system of care based on the primary care physician as the repository and facilitator of medical care for the child was developed. The American Academy of Pediatrics adopted these concepts in 1992, then expanded and operationalized the definition in 2002.^{2 - 3} The definition of the medical home included access to family-centered, community-based, coordinated care directed or delivered by a primary care physician offering comprehensive, continuous, culturally effective, and compassionate care. Medical care was offered in the context of family and community.

There was early recognition that children have unique characteristics that must be reflected in any system of care. A recent analysis conceptualized these characteristics compared with adults as 4 D’s: developmental change, dependency, differential epidemiology, and demography.^{4 - 5} The Maternal and Child Health Bureau Title V/HRSA Performance Measures and Priority Outcomes stressed assessment of the development of community-based systems of services and the pivotal role of families as the ultimate decision makers for their children.⁶

The following case demonstrates the relevance of a developmental framework of the medical home in an early childhood system of care, the critical moments for prevention and intervention, and implementation challenges in achieving performance criteria.

The child is an adopted 9-year-old who had been in foster care since age 3 years as a result of substantiated sexual abuse. She developed posttraumatic stress disorder with auditory hallucinations and homicidal ideations following her abuse. While her parents denied knowledge of how she had been abused, her mother spoke of her own debilitating substance use and inability to care for the child; the mother later disappeared. The father conceded his inability to care for the child or adequately protect her. Other family members were unable to assume her care. Evaluation by a multidisciplinary team linked to a medical home resulted in joint planning with the biological parents; engagement in continuous primary care with coordination of needed follow-up in the specialty program; monitoring of growth, developmental, and educational needs; appropriate early periodic screening, diagnosis, and treatment services, including mental health services by a colocated trauma-focused psychologist; follow-up subsequent to psychiatric hospitalizations; collaboration with a court-appointed advocate; court testimony by the relevant child health professionals over 6 years; supportive community-based services for the biological and foster family; and evaluation of and placement of the sibling in the same adoptive home. Cross-discipline and agency communication and Health Insurance Portability and Accountability Act–compliant sharing of clinical information facilitated the care of this child.

This child was one for whom the system of care was called on to act. The demography and epidemiology of the problems illustrated are in contrast to those encountered by adults. The child's exposure to adverse childhood events posed a risk to her current and future physical and emotional health.^{7 - 8} The physical and emotional trauma threatened her neurodevelopment and without intervention would have put her at risk for evolving learning problems, early initiation of sexual activity, sexually transmitted infection, teen pregnancy, substance use, parental dysfunction, unemployment, and myriad other problems such as anxiety, depression, and disordered social relationships throughout her life. Her risks for developing problems changed over time in response to her cognitive awareness of her trauma and the developmental tasks ahead of her.

The child's needs extended from the most basic, such as a safe home, mentorship, and love from a caregiver to the complex needs for evidence-based treatment. The obvious threat to providing primary care would be the inability to ensure coordination of services within a longitudinal relationship by a group of child health professionals with specific knowledge about the management of her complex problems. It also became critical that she know and trust her clinicians. The child was able to maintain her medical home, but entry into foster care often disrupts the medical home. Once a child is placed into foster care, the tenets of the medical home may not be maintained unless the program is designed to do so; once out of foster care, the medical home model is again disrupted, often with coincident lack of sharing of vital medical, psychiatric, educational, and psychosocial information. An electronic health record may facilitate access to basic immunization records, medical and medication management history, and results of prior diagnostic evaluations and treatment plans.

Linking families under stress to evidence-based treatment for substance use, medical and mental health ailments, and interventions for family violence is critical. Safety alerts may preclude a family-directed decision-making process but should be attempted. Child-specific advocacy is needed. While this child remained with one foster family throughout, many children and adolescents experience several placements, with resultant loss of transfer of vital health and mental health information, aggravation of baseline symptoms, and escalation of child dysfunction. At a system level, agencies with different mandates often do not share information vital to coordinated management, and lack of access to linguistically and culturally relevant services complicates child adjustment. Agency involvement across state lines may be necessary, is not uncommon, and further complicates coordination of care.

Achieving some of the promise of the PPACA will rely on implementation guided by a better understanding of the critical components of the FCMH that lead to improved child outcomes. Prevention and early intervention programs have the greatest effects in early childhood. Pilot testing of the FCMH model, as well as research into the aspects of the continuum of care with integration of elements of the chronic care model with parents as decision makers, links to community-based health teams, and care coordination are all worthy of studies. Special attention is needed for the habilitative and health-promoting services provided within this model that allow greater flexibility in the child's care team and plans for more frequent modifications than for adults.⁴

The most poignant lesson of the case presented is the potential effects of adverse childhood events and the necessity for timely preventive services. The PPACA provides the opportunity to bring the system closer to the realization of a fully integrated early childhood comprehensive system of care that brings to life the FCMH model. Informed input into this process by physicians and other health professionals, skilled management of interagency and interdepartmental coordination, learning from problems, and working with key stakeholders including patients and families will be essential.⁹ As noted by Landers in the article on optimizing a patient-centered medical home of frail elderly persons,¹⁰ a policy directive that can be achieved with the PPACA is support of robust research efforts in the FCMH and the patient-centered medical home to offer the hope of primary prevention and early and effective intervention for those most vulnerable.