Medical Homes for Children with Special Healthcare Needs

My family has been fortunate in many ways. With great health insurance, we selected a pediatrician several months before our son was born. For almost eighteen years we have benefited from having the same pediatrician. He is knowledgeable, accessible, friendly, convenient, and well-connected to the specialist community in the Baltimore-Washington area. He is comfortable referring us to needed specialists and is motivated to integrate specialist knowledge into my son's overall interventions.

CHADD endorses the concept and experience of a "medical home" (clinical home/healthcare home) for children with special healthcare needs as defined, implemented, and advocated over the past decade by the American Academy of Pediatrics (www.aap.org). As defined by AAP, medical homes are about a single medical practice taking ownership/responsibility to coordinate interventions for children with special needs, whether those children have either complex needs or a variety of needs.
The essential elements of a medical home for children with special healthcare needs are:

• Personal physician in a culturally and linguistically competent physician-directed medical practice who provides continuous and comprehensive care.
• A focus on the "whole" child, youth, and family with coordinated care/services/supports.
• A family-driven partnership that ensures a coordinated network of community-based services where both physicians and families share accountability for quality improvement through a performance measurement system.
• A focus on transitions to ensure no disruptions of services as children and youth progress through normal stages of growth and development.
• Privacy-protected, family-driven electronic medical records for communication with youth and families, and consultation between treating professionals.

My son has had numerous health and developmental/learning challenges over his lifetime. What I want to see happen is every child in America having access to a pediatric practice that meets the essential elements of a medical home as defined above. This is also a "hot" topic in Washington's debate over healthcare reform. A topic for another day is all the issues and challenges with this model. I am very actively involved in these medical home public policy debates. CHADD also supports the National Health Council's "Putting Patients First" campaign, an effort to promote care coordination through electronic medical records.

I have recounted to CHADD audiences many times my son's challenges and our frustration, even with a great pediatrician, in coordinating and integrating professional information in helping my son. I asked a CHADD-Pennsylvania volunteer leader, Kirsten Leonard of West Chester, to share her experiences in accessing, coordinating, and integrating professional help for our children. Both our families have seen a variety of professionals over time. Both our families benefitted from participating in early intervention programs. One thing Kirsten and my wife Beth have in common is that despite access to great professionals, they are the care coordinators. Their families are fortunate that Kirsten and Beth have the time, ability, knowledge, and resources to so coordinate. Think of all the parents in our society who don't have the time, ability, knowledge, or resources to coordinate professional services for their family members. The medical home model is designed to make such information sharing and coordination less burdensome on the family and more a medical practice responsibility.