Background and Definitions

A special needs child is one who has or is at risk for a chronic physical, developmental, behavioral, or emotional condition and requires health and related services not usually required by healthy children with normal development. Up to 18% of children have special needs, and the prevalence of children at risk is unknown.¹ As a primary care physician, you will encounter a wide variety of chronic childhood conditions. Some examples include Down syndrome, asthma, organ transplantation, childhood cancer, cerebral palsy, autism, attention-deficit/hyperactivity disorder (ADHD), human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS), and hearing loss. Chronic conditions and special needs occur more often among children who live in poverty and socially deprived environments.²

Children with special health-care needs (CSHCN) often have more frequent visits to their primary care doctor. Depending on their diagnosis, they may require subspecialty care, therapies, special education, and/or social services.¹ These therapies may include physical, occupational, speech, feeding, and/or behavioral. Together the pediatrician and family should provide care that meets all the child’s needs. Adequate information must be provided to school nurses and educational staff for medically complex children to safely attend school with maximal participation. The pediatrician also communicates with other providers to coordinate care and ensure that needed care is provided. Some pediatric residents and practicing physicians feel a lack of expertise and comfort in caring for the diverse needs of CSHCN.³ Most primary care offices are set up to provide routine well care and episodic sick visits for otherwise healthy children.⁴ In this setting, it is a challenge to provide comprehensive and coordinated care to CSHCN. Studies have shown coordinated care is more efficient and cost-effective, and there is greater family satisfaction. This is a dynamic process because the child and family’s need for care and service will vary over time. The need for intervention is usually increased during the diagnostic process, hospital discharge planning, school entry, at transition to adult care, and with any significant change in health status.⁵

The Medical Home

Because many CSHCN see multiple subspecialists and have related services, care can be fragmented. The medical home was initially devised as a place to house all health- and service-related records for CSHCN.⁶ It has evolved into a model for “a partnership approach with families to provide primary health care that is accessible, family-centered, coordinated, comprehensive, continuous, compassionate, and culturally effective.”⁷ This includes traditional primary care, immunizations, and anticipatory guidance, as well as coordinating all other aspects of care related to the child’s diagnosis. For example, you determine the need for subspecialty consultation and communicate with the subspecialist and family about any recommendations. The medical home should be a source of empowerment for families to develop their own advocacy skills. The family is the primary caregiver and decision maker for their child. The pediatrician is the “quarterback” to ensure smooth integration of these services. A medical home should provide a site for sick and well care, a personal doctor or nurse for each child, easily obtained referrals, and coordinated and family-centered care.⁷ There are specific training programs to facilitate primary care practice transition to a medical home. However, lack of third-party payment for this comprehensive care remains a significant barrier for increased implementation among primary care physicians.⁵ This is especially true in community-based private practices.