PABI Plan - The Sarah Jane Brain Project

understanding determinants of long-term functioning and of identifying later emerging problems,
it is essential the Centers track children over the course of development into adulthood.
Initially, children and families will be followed up with at short intervals to track acute recovery,
and then over longer time periods throughout the continuum into adulthood. The Centers will
also track the services received by the child/young adult and family over time. Data on school
systems and integrated services will be collected to address the following questions:
• Do the Centers’ interventions and training make a difference?
• Do the child/young adult get different services based on that intervention and
training?
• What services made a difference?
Provide Advocacy & Support
The Centers’ roles in the domains of advocacy and support services to individuals with PA/TBI
and their families will be a key component of the mission of the Centers. The vision is to
provide and evaluate a broad range of support and advocacy services including:
1. Advocating for services for the child/young adult and family,
2. Providing training in self-advocacy and self-determination to the children/young adults,
3. Providing training in effective care coordination and advocacy to family members or
other caregivers (e.g., family mentors),
4. Providing training in strategies to promote family adaptation and positive child
development to parents/guardians and families.
The initial approach for delivering these services will be based upon the current empirical
evidence base and best practices. However, the intent would be to conduct ongoing formative
and summative evaluations of these services as part of the Centers’ mission, including input from
consumers/constituents (parents, children, and community agencies) to further refine and inform
best practices.
Programs developed by Glang and colleagues provide an evidence-based approach for training
families in effective advocacy and communication skills for interfacing with schools.
Researchers in special education transition have identified evidence-based practices that are
effective in teaching students with disabilities the skills needed for self-determination and selfadvocacy.
Currently, however, students with PA/TBI lack access to instruction in these skills, since
students with PA/TBI are under-identified in terms of eligibility for transition services, and
educators and transition specialists are not skilled in working with these students when they are
referred. Wade and colleagues’ family problem-solving model may provide an empiricallysupported
approach for providing support and skills training to families. The SJBF Centers will
inform existing community agencies so they recognize and qualify this population for their
services. Toward this end, Glang and colleagues have developed and are currently testing a
model for increasing identification and appropriate treatment of PA/TBI in the school system.
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