BACKGROUND: Over the past half century the prevalence of childhood disability increased dramatically, coupled with notable increases in the prevalence of mental health and neurodevelopmental conditions. This study provides a detailed assessment of recent trends in childhood disability in relation to health conditions and sociodemographic factors. METHODS: Secondary data analysis of National Health Interview Survey (NHIS) datasets 2001–2002, 2004–2005, 2007–2008, and 2010–2011 (N = 198 888) was conducted to calculate the prevalence, rate of change, severity, and sociodemographic disparities of parent-reported childhood disability. RESULTS: The prevalence of childhood disability has continued to increase, growing by 15.6% between 2001–2002 and 2010–2011. Nearly 6 million children were considered disabled in 2010–2011. Children living in poverty experienced the highest rates of disability, 102.6 cases per 1000 population in 2010–2011, but unexpectedly, children living in households with incomes ≥400% above the federal poverty level experienced the largest increase (28.4%) over this 10-year period. The percentage of disability cases related to any physical health condition declined 11.8% during the decade, whereas cases related to any neurodevelopmental or mental health condition increased by 20.9%. CONCLUSIONS: Over the past decade, parent-reported childhood disability steadily increased. As childhood disability due to physical conditions declined, there was a large increase in disabilities due to neurodevelopmental or mental health problems. For the first time since the NHIS began tracking childhood disability in 1957, the rise in reported prevalence is disproportionately occurring among socially advantaged families. This unexpected finding highlights the need to better understand the social, medical, and environmental factors influencing parent reports of childhood disability.

Myelomeningocele, a complex congenital anomaly caused by incomplete neural tube closure during embryonic development, affects approximately 1 in 1500 to 3300 births in the United States annually.^1,2 Individuals with myelomeningocele have lower extremity sensory and motor dysfunction as well as long-term neurodevelopmental sequelae that affect motor skills, self-care, bladder and bowel control, and cognition.^3-10 Despite recent advances in the treatment of myelomeningocele, individuals tend to have some level of persistent and lifelong disability.^5,7,11

This clinical report updates a 2006 report from the American Academy of Pediatrics titled “Sexuality of Children and Adolescents With Developmental Disabilities.” The development of a healthy sexuality best occurs through appropriate education, absence of coercion and violence, and developmental acquisition of skills to navigate feelings, desires, relationships, and social pressures. Pediatric health care providers are important resources for anticipatory guidance and education for all children and youth as they understand their changing bodies, feelings, and behaviors. Yet, youth with disabilities and their families report inadequate education and guidance from pediatricians regarding sexual health development. In the decade since the original clinical report was published, there have been many advancements in the understanding and care of children and youth with disabilities, in part because of an increased prevalence and breadth of autism spectrum disorder as well as an increased longevity of individuals with medically complex and severely disabling conditions. During this same time frame, sexual education in US public schools has diminished, and there is emerging evidence that the attitudes and beliefs of all youth (with and without disability) about sex and sexuality are being formed through media rather than formal education or parent and/or health care provider sources. This report aims to provide the pediatric health care provider with resources and tools for clinical practice to address the sexual development of children and youth with disabilities. The report emphasizes strategies to promote competence in achieving a healthy sexuality regardless of physical, cognitive, or socioemotional limitations.