PABI Plan - The Sarah Jane Brain Project

CHAPTER 10: Organizational Structure
National Structure to implement the National PABI Plan
The mission of the PABI Plan is to develop a “seamless, standardized, evidence-based system of
care universally accessible for all children/young adults and their families regardless of where
they live in the nation.” The first step in developing a PA/TBI Model System to fulfill this
mission is to create a national structure which provides complete national coverage with the
ability to standardize the system of care while still providing the flexibility for each state to have
its own pathway to universal accessibility. This network of 52 institutions will serve as State
Lead Centers of Excellence, one for each state plus the District of Columbia and Puerto Rico. In
order to achieve the goals as outlined in the PABI Plan, each State Lead Center has collaboration
experience, case management experience and a strong understanding of the existing structures
within their state.
SJBF organized a seven-person Center Selection and Support Committee (CSS), made up of
leading experts in the field of pediatric brain injury, one Member from each region, to develop
the application process and review and approve the applicants to become a State Lead Center.
SJBF will maintain this CSS Committee as oversight of the overall grant and this committee will
be responsible for creating quarterly reports to our federal partners as well as to Congress and the
public.
Each State Lead Center has certain essential, desirable and optional capabilities with the main
responsibility to develop and implement a Statewide Master Plan to accomplish the goals and
premises as outlined in the PABI Plan for their entire state. They will work through and within
the existing structures within their state, while helping to build the capacity of these structures to
provide complete coverage to these children/young adults and their families. We will not
duplicate current services and create further fragmentation within each state.
Part of each State Lead Center’s Master Plan for their state will be providing a specialized case
management system for the children/young adults and their families. Once a PA/TBI is
diagnosed in their state, the State Lead Center will “attach” themselves to the families and never
let go unless they move to another state, and then the State Lead Centers in both the original state
and the destination state will collaborate to ensure a seamless transition for that family from one
location to the next. These SJBF Specialists will be highly trained case managers who
understand the needs of PA/TBI families and have a great understanding of the services offered
in their state.
There will be different Levels of designation for institutions and organizations throughout each
state based upon their capabilities and experience. For example, each State Lead Center will also
need to serve as a Level 1 SJBF Center with a dozen SJB Family specialists, a Field Specialist
for educational training capabilities and a Center Manager with administrative support for a
specific geographic/demographic range. A Level 2 SJBF Center will have fewer capabilities (six
SJB Family Specialists, a Field Specialist and no administrative support) and a Level 3 SJBF
Center will have even fewer capabilities (three SJB Family Specialists only). As an example,
Texas’ Master Plan has five Level 1 SJB Family Centers (Austin, Dallas, Houston, El Paso and
74