PABI Plan - The Sarah Jane Brain Project

school graduation until they cobble together an individual program of advocational interests,
groups, clubs, and a routine to everyday life that is socially and personally fulfilling.
Social opportunities can be effectively developed, as there currently exists all across America a
large variety of programs that provide support for individuals who have a combination of
cognitive and physical disabilities. The individuals who run these programs need education in
the particular disability profiles associated with acquired brain injury. If ABI-appropriate
education is offered to community personnel and if case management is provided to the
individual’s family linking them up with these specialized camps, programs, and opportunities, a
good transition between pediatric social opportunities and adult social opportunities can be
constructed.
All along, for those who have had severe acquired brain injuries as well as for their more
moderate to mild brain injury peers, there is a lack of opportunity for informal social
interactions.
Section II: Current Problems
Medical
There is a serious lack of adult medical providers knowledgeable and the complex medical,
neuropsychological, and rehabilitative needs of PABI patients in order to transition that patient
for both primary care and specialty care needs. The investigation of ongoing need for specialty
medical care, for PCPs who are expert in the long term sequalae of pediatric trauma and acquired
brain injury, who are willing to serve as adult PCPs, and a system for educating adult providers
and transitioning families from the quality medical care that they enjoyed for their children into
equally qualified and available adult medical providers, are areas in which data collection is
necessary.
Further, there are no data on long term impact of severe physical trauma, particularly trauma
affecting the brain’s ability to regulate and control the arousal, inhibitory, and growth systems of
the body. It is also not known how the associated protracted course of medications taken by
young children and adolescents following severe brain injury affects the health and development
of their internal organs (kidney, liver, heart) in adulthood. PCPs who had access to a large data
base of individuals who had severe traumatic brain injury as they age over the next twenty or
thirty years of their life would be able to make more educated decisions regarding etiology,
treatment, and care of these new medical problems in their adult PA/TBI patients..
When children who have had PA/TBI leave the supportive social environment of school, they
often experience a serious psychological and emotional crisis. Prone to anxiety anyhow, these
young adults often become quite withdrawn, socially avoidant, and seriously depressed. The
lack of education regarding the implications of PA/TBI on emotional, psychological, and social
development among community based psychologists, psychiatrists, and community mental
health providers, results in treatment failure. Emotional problems thus blossom and become
more entrenched and serious psychiatric disorders may develop.
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