PABI Plan - The Sarah Jane Brain Project

appropriately in the care of the child/young adult with a brain injury. Ongoing research is
essential and will be conducted in the best way to care for children with PA/TBI, and as new
information emerges it will be disseminated to other sites as rapidly as possible. Each Center
will have exceptionally-trained Sarah Jane Brain Family (SJBF) Specialists who will operate as
“super-caseworkers” for each family.
Rehabilitation begins during the acute recovery phase and can continue throughout the child or
young adult’s life. The SJBF Centers will seek to expand our understanding of how much, what
kind and when rehabilitation is necessary for various kinds of PA/TBI. Communication with the
family and the initiation of the transition the family will undergo is imperative. Initiating
rehabilitation programs early is paramount, but so is the recognition that the rehabilitative
process continues in the child/young adult’s community and this rehabilitation needs to be
ongoing as the child/young adult develops and grows and the brain undergoes the physiologic
preplanned growth and refinement necessary for brain maturation. Indeed, one of the reasons
why PA/TBI is so different from adult A/TBI, is the fact the brain is maturing and new skills are
emerging. Infants, children and young adults often manifest their PA/TBI when they fail to meet
expected developmental milestones at the appropriate times.
It is equally important to recognize that transitioning from the pediatric system into the adult
system of care is one of the most difficult and challenging phases. There is a need to coordinate
the transition for individuals, caregivers, educators and the community since the adult system of
care is more directed towards independent living and vocational training without the structured
support system of the ideal pediatric system. There is very little research done within the Adult
Transition Category of Care.
In order to develop a system of care that is universally accessible for all children/young adults
and their families no matter where they live in the nation, it is imperative we have an emphasis
on the families living in rural America, which encompasses over 75% of the landmass in our
country and almost 25% of our population. In order to accomplish this mission, telehealth and
telerehabilitation programs must be developed, tested and implemented throughout the country.
In order to standardize the system of care, evidence and data will be collected, analyzed and
stored through The Virtual SJBF Center. In addition to serving as a data collection pool, the
Virtual Center will be an online resource for individuals, families, professionals and the general
public for all stages of the continuum of care and an opportunity to use advancements in
healthcare I.T. to improve the system of care.
Long-term revenue models:
An additional component of the National PABI Plan is the Sarah Jane Brain Legal (SJBL)
Center. The purpose of the SJBL Center is to provide children and adolescents with the best
means of accessing the supports and services necessary for individuals with PA/TBI. The legal
center will incorporate education about and the most effective means for obtaining these services
from the medical, educational and social services communities or organizations, as well as other
legal entities, in the most efficient manner. Always taking into consideration the needs of the
child/young adult and family, the legal center will ensure a continuum of service delivery into,
through and beyond the legal age for those services. The legal center will serve as a legal hub
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