PABI Plan - The Sarah Jane Brain Project

PA/TBI and their families, delivered by effectively trained and supported community
professionals.
Sarah Jane Brain Project (SJBP):
In an effort to address this major gap in care, the SJBP organized and consulted with the
Working Group of its National Advisory Board. These experts in the field of PA/TBI have over
1,000 years of collective experience and their task was to analyze the continuum of care for
PA/TBI, identify the problems along this continuum and then propose solutions. As a result of
this effort, the National PABI Plan was drafted and made public along with the first letter sent to
President Barack Obama on January 20, 2009, at 12:01 p.m. (a copy is available on the website
www.TheBrainProject.org). This grant proposal has been developed from the final version of
this comprehensive, integrative, accessible, culturally sensitive, long-term and child/family
centered circle of care for PA/TBI. These experts included families and family advocacy
organizations, physicians, allied health care professionals, educators and researchers.
Wherever possible, recommendations are based on evidence derived from "good" science.
However, there is little research being done in the broad field of PA/TBI in comparison to the
magnitude of the problem. We have identified key research questions that will be addressed
immediately to improve the management and long-term treatment of PA/TBI. There were two
key research components examined by the Working Group along the continuum: 1) translational
research – “What are the questions needed to be asked and what data needs to be gathered to
ensure the PABI Plan is tested, evidence-based, and replicable?” and 2) scientific investigative
research – “What are the questions needed to be asked and answered to advance the field of
PA/TBI?”
The long-term research agenda of the SJBF Centers will be formed by emerging clinical and
research evidence and reflect an interdisciplinary integration of research questions and
methodology. It should be noted this research agenda is by no means complete, but does
represent the areas of research that can provide the maximum help in the management of PA/TBI
as quickly as possible with future research needs to be delineated over time. Indeed, the entire
circle of care will need to be modified as more evidence of best treatments is documented.
This group of experts was divided and asked to address (1) prevention, (2) acute care needs, (3)
transition to the community and ongoing rehabilitation, (4) long-term needs, (5) research which
will span all phases and (6) child/young adults, parents/caregivers, siblings and other family
considerations at each stage. Where necessary, the severity and cause of the PA/TBI was also
addressed.
In addition, the definition of PA/TBI takes into consideration and includes the age range from
birth to age 25 years because of the recognized physiological developmental changes that the
brain is still undergoing in the third decade of life. As such, it encompasses the care of over 73.3
million children and young adults within the United States of America based on the 2000 census.
The PABI Plan has been developed into seven “Categories of Care” for treating brain injuries in
children and young adults: 1) Prevention, 2) Acute Phase, 3) Mild TBI Assessment / Treatment,
4) Reintegration / Long-term care, 5) Adult Transition Phase, 6) Rural / Telehealth and 7) The
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