Chapter 67: Clinical Management of the Pediatric Patient with Disability

INTRODUCTION

The incidence of childhood disability has increased dramatically over the past half a century from approximately 3% in 1969 to 15.1% in 2009.^1,2 This dramatic increase is not only in part due to the advances in medical treatments and technology but also due to awareness of disability and the inclusion of children with behavioral and developmental disorders.^1,2 Although these children comprise a small portion of the population, they account for nearly 50% of hospital days and hospital charges.³ Pediatric physiatry is a unique specialty providing comprehensive and coordinated care to children with acquired or congenital physical disabilities.

Many of the patients seen by pediatric physiatrists fall in the category of “children with special health care needs (CSHCN).” They are defined as “those who have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount required by children generally.”⁴ Many see multiple subspecialists and require a general health framework, planning, and guidance. There are over 800 congenital syndromes responsible for childhood disability, so it is impossible for any single physician to be familiar with every aspect of a given disease. Effective care allows a collaboration with the breadth of expertise required but needs to have a home base for the patient and family. In 1992, the American Academy of Pediatrics defined a “medical home” as a place that “provides care that is accessible, comprehensive, coordinated, compassionate, family-centered, community-based, and culturally effective.” For CSHCN, coordinated care has been shown to result in better outcomes and fewer hospitalizations.⁴ The pediatric physiatrist has a key role in the maintenance of the medical home. Although physiatrists are not meant to replace primary care physicians, they play a crucial role in the coordination, identification, and maintenance of care. In addition, physiatrists are physicians of function that navigate therapeutic and supportive services and care coordination, which Benedict cited as a determinant of a high-quality medical home.⁵ The presence of a coordinated medical home did not just benefit the child, but the parents of CSHCN who were in a medical home were found to have better coping.⁶ Children and families with special health care needs benefit from having a pediatric physiatrist on the treatment team.

GROWTH AND DEVELOPMENT

A pediatric physiatrist constantly assesses the needs of children with disabilities to promote growth and development. Attention to health promotion and prevention of secondary medical problems is crucial to optimize physical performance and function. An initial understanding of typical developmental milestones is critical in the assessment of a child with disability (Table 67–1).