What Happens when Special Needs Children Grow Up?

Medical care for special needs patients historically has been the domain of the pediatrician. However, now that people with a wide range of conditions are more often living into adulthood, internists need to assume care for an increasing number of special needs adults. In an effort to improve health outcomes for this vulnerable segment of the population, internal medicine residents need to have training content dedicated to the care of aging special needs patients. The first step to address the disparities in care is to understand the term “special needs,” which can be interpreted in a variety of ways. In the pediatric literature, the term “children with special healthcare needs” (CSHCN†) refers to a variety of conditions, including children with normal cognition but a range of chronic health conditions and systemic illnesses, such as cystic fibrosis, sickle cell disease, and even asthma, as well as physical limitations and emotional conditions. The term also includes young people with varying cognitive impairments such as autism spectrum disorders, Down syndrome, and many other forms of cognitive limitation. The terms “special needs” or “special healthcare needs” are non-specific, but for lack of better terminology, they will be used in the following discussion. Ideally, one would have precise definitions and an accurate count of all adults with special needs, but at the present time we must use proxies from the pediatric literature. Little data exists on the care these patients receive once they age out of treatment by pediatricians. Some patients with rare health conditions continue to receive much of their healthcare from specialists after turning 18. Some stay with their pediatric specialists, while others find adult-oriented specialists; many of these specialists are highly qualified in their fields of expertise. But like other adults, these patients would benefit from knowledgeable and involved primary care physicians who can function as advocates and ensure the patients receive age appropriate preventive care. The number of special needs patients is substantial. Newacheck et al. [1] used the National Health Interview Survey and Disability Survey of 1994 to estimate that 18 percent of children younger than 18 met the