PABI Plan - The Sarah Jane Brain Project

CHAPTER 7: Categories of Care: Transition to Adult Life Following PA/TBI
Introduction
As adolescents transition into adult life with a brain injury sustained in childhood, they and their
families confront yet again a major set of challenges as they navigate this most significant
transition. In the best scenario, the older adolescent has had good, comprehensive medical
services that have addressed all of his or her general pediatric as well as specific neurological,
rehabilitative, psychological, and therapeutic services particular to his or her brain injury-related
needs. The best background situation would also see this young adult entering the world of work
or postsecondary education with a long history of successful special education interventions that
have been particularly tailored to his neuropsychological profile of strengths and weaknesses,
with consideration of personal interests, goals, and family values. Finally, the individual who is
optimally prepared to make this leap into adult life following pediatric brain injury will have a
reasonably well developed set of social skills, interpersonal experiences, and involvement in
recreational pursuits, camp programs, and group activities centered around areas of interest
shared with other same-age peers. In this scenario, the older adolescent’s well-prepared parents
would have been educated in the wide variety of community resources that have supported their
son’s or daughter’s development of appropriate independence, assumption of social
responsibilities, and they will be ready to continue in the process of letting go of their child from
a home-centered, family-centered social life to a more independent social center focused outside
the family home.
Even in this very best of situations, which is likely the minority of pediatric ABI situations, these
very well-prepared families and young adults face a variety of significant hurdles as they
navigate the transition into adult life following pediatric acquired brain injury with their son or
daughter.
To survey the landscape of this transition as carefully as possible, we will consider the current
status, the current problems, and the clinical and research data needs pertinent to three aspects of
the transition into adult life following pediatric acquired brain injury: 1) medical and therapy
care, including mental health, 2) the transition from school to work including the primary shift of
focus from public school to postsecondary education, vocational preparation, and work, and 3)
support of social development from social life centered on the family of origin to social life
based in relationships outside the family, friendships, and independent, community-based living.
Current status, problems faced, and needs vary dramatically depending on whether the individual
has a high need for services and specialized resources or a more circumscribed, less intensive
need for services and specialized programs, within each of these three aspects of care. Therefore,
we will further delineate “high need” and “low need” pathways. The pathways of care in
medical, school, and social transitions into adult life for children who have PA/TBI are
pictorially represented in Figure 1 below. In Figure 6 below, the top pathway in each domain, in
darker blue, describes the status for children, adolescents, and young adults who have higher
levels of need and the lighter path in pale blue underneath describes the situation for individuals
who have lesser degree of needs.
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