Hillary Clinton wrote It Takes a Village [to Raise a Child] (Clinton, 1996). Those words are never more apropos than in the case of those with developmental delay and other special needs, whether physical or mental. In the recent article “The Role of Health Advocacy in Transitions from Pediatric to Adult Care for Children with Special Health Care Needs: Bridging Families, Provider and Community Services” (Okumura, Saunders & Rehm, 2015), three researchers performed a qualitative study to discern the roles of various stakeholders within the “village” during that crucial stage of transition from childhood to adulthood for special needs individuals to assure adequate provision and continuation of services. They designated their target for research as “Youth and Young Adults with Special Healthcare Needs” (YASHCN), and interviewed 41 persons among that group, their parents, and healthcare advocates/providers. The specific concern was how the YASHCN group fared when moving from pediatric services to adult, which the researchers called “Transition Advocacy” (Okumura, Saunders & Rehm, 2015). In addition, they isolated three specific areas of difficulty and focused on those: “Fighting for healthcare”, “Obtaining resources”, and “Getting ready to transition” (Okumura, Saunders & Rehm, 2015).
The first category, regarding healthcare, appeared to be the most contentious. As children, public services associated with school districts and other resources anticipated and arranged for most healthcare needs. Once the child moved into the age of adulthood (18), this network evaporated and the gap was expected to be filled by the individual or parent(s) in most cases. Without adequate preparation, and even with, this was viewed as a fight or struggle by all participants. Particularly for children with mental/developmental issues, knowing who to contact and how to do so to continue needed therapy or other services was virtually impossible (Okumura, Saunders & Rehm, 2015). A community advocate was determined to be essential for this function. The results were nearly identical for the other two categories. The two biggest needs identified in smoothing transition were preparation and, particularly for mentally/developmentally challenged individuals, a community advocate. Although some parents were able to assume this role that happened mostly when the parents had means and education.
In the opinion of this writer, this time period in the life of developmentally challenged individuals has always loomed as fraught with peril and uncertainty. Moving from a status where committees, teachers, and community providers monitored one’s every move to a situation of fending for one’s self has got to be stressful and challenging. This article reinforced that view, and isolated specific areas of challenge. The researchers indicated at least one potential remedy, appointment of a community advocate, but family and individual preparation, beginning at around age 16, is crucial as well. This is a highly significant issue that needs more thoughtful writing and consideration to assist those who otherwise might be left in the lurch without access to available services.
- Clinton, H. (1996). It Takes a Village. New York: Simon & Schuster.
- Okumura, M., Saunders, M. & Rehm, R. (2015). The Role of Health Advocacy in Transitions from Pediatric to Adult Care for Children with Special Health Care Needs: Bridging Families, Provider and Community Services. Journal of Pediatric Nursing 30(5), 714– 723. doi:10.1016/j.pedn.2015.05.015