Here is an article I contributed to New Jersey Pediatrics, Volume 39, Issue 2, Summer 2014 (reprinted with permission from the American Academy of Pediatrics – New Jersey Chapter).
The goal of any health system is to optimize health and minimize disease burden over the life span, for individuals, families and society. Pediatric primary care providers play a pivotal role in this process. It is their responsibility to promote and maintain the health of individuals from birth through 21 years of age. By addressing the sources and mechanisms of chronic disease and disabilities, pediatricians can contribute to improving odds of lifelong health.
Children and adolescents with neurological, neurodevelopmental, neurobehavioral and intellectual disorders and diseases present special challenges. Conditions such as Autism Spectrum Disorders and ADHD are being diagnosed in epidemic proportions, and are rapidly becoming adult epidemics. However, most adult practitioners have little education, training or experience in dealing with chronic disorders that begin during infancy or childhood. After years of being nurtured by an array of medical, educational, government and other support services prior to age 21, families are jettisoned into a confusing and dysfunctional system ill-equipped to continue the substantial gains and stability of the pediatric years. Families become despondent as their special needs children–now suddenly considered adults despite lacking the usual maturational surrogate markers of such a transition, and often functioning at childhood developmental levels–sit at home and regress without school routines, vocational programs, social outlets, or community integration. Families subsequently encounter a dearth of adult primary and specialty care providers that are versed in the care and management of these challenging individuals, which often leads to one crisis after another, without therapeutic progress.
Yet, individuals with special needs have abilities, not just disabilities. Their success is dependent upon the same needs as their typical peers: healthy lifestyles, educational and vocational opportunities, proper housing, community involvement, social outlets, creative arts and physical activities, and adult independence/supported individuality. It is morally and ethically unjust to only provide these pathways to the non-disabled community. Additionally, the Affordable Care Act (ACA) has impelled government and insurance companies to create innovative health care delivery models that provide cost effective care through promoting quality health outcomes. The lack of proper adolescent to adult health care transitioning programs is antithetical to the tenets of the ACA. Rather, the absence of attention to transitioning special needs patients has, and will, explode the costs and risks to third party and government payers, as well as physicians. Additionally, there are many “hidden” costs associated with this dilemma, including fragmentation of care, stress on caregivers, absence from work, family instability, and more. This emergent situation is complex, but pediatric primary care providers can play a pivotal role in preparing special needs patients and their families for a smooth and well-planned transition to adult life, resulting in better health outcomes.
How can pediatric primary care providers make a difference?
- Understand that disorders in this population have a biological basis, and should be assigned medical, not “mental health”, diagnoses. Physicians should assist and assure that the diagnostic odyssey and therapeutic interventions of their patients are pragmatic and evidence-based. Misdiagnosis or improper diagnoses that are carried over to adult life will lead to unnecessary and potentially toxic therapies and interventions.
- Proper biological phenotyping of special needs populations requires primary care providers to engage with multidisciplinary teams of specialists. Analyzing their underlying genetic risks and susceptibilities, neurophysiological manifestations, metabolic state, neuropsychological functioning, and functional behaviors will lead to therapies targeted at underlying disease processes rather than external symptoms.
- Prepare families well in advance for the adult transition so they are ready for the challenges of obtaining intensive adult services, such as residential placement or vocational training. Pediatricians can partner with specialty care health organizations well versed in navigating these complexities, or can direct families to an array of family support organizations.
- Many pediatricians, by default or choice, find themselves caring for their special needs patients beyond age 21. I would encourage this approach to ensure that patient transitioning is complete and flawless. Many innovative specialty care medical homes provide seamless services throughout the lifespan, and pediatricians should consider partnering with them.
- Pediatricians are crucial in assuring that specialized health maintenance protocols are followed, as occurs, for example, with disorders such as Down Syndrome and various metabolic disorders. Additionally, please advocate on behalf of your patients for proper educational accommodations and classroom placements.
- It has been well documented that children with special needs have higher aggregate health care costs than their typical peers.  One cost contributor is higher prescription drug use. Although medications are sometimes necessary to target behavioral manifestations or co-morbid disorders, such as epilepsy, there is a tendency to over-medicate this population. Pediatricians should monitor for excessive prescribing that can occur as a result of fragmentation of specialty care. Pediatricians should refer families to organizations that provide non-pharmacological therapeutic interventions integrated with medical expertise.
Overall, health care funding paradigms will be changing to systems based on health outcomes, the ability to manage and/or share risk, physician accountability, longitudinal integration of services, and lifespan care and management. Thus, health care reforms present not just challenges, but rather opportunities for pediatricians to play an active role in helping this deserving population.
- Halfon N, Conway PH: The opportunities and challenges of a lifelong health system. N Engl J Med 2013; 368:1569-1571.
- Taylor JL, Smith LE, Mailick MR: Engagement in vocational activities promotes behavioral development for adults with Autism Spectrum Disorders. J Autism Dev Disord 2013; Nov 28. [Epub ahead of print]
- Lavelle TA, Weinstein MC, Newhouse JP, et al.: Economic burden of childhood autism spectrum disorders. Pediatrics 2014; published online February 10; doi: 10.1542/peds.2013-0763