Survivors As Stakeholders in the Public Policy Debate
November 30, 2009
Firstly, we are the most important stakeholder in our own affairs and community.
- There is a need to craft policy with attention to our fundamental human rights always at the forefront.
- There is a need to focus on our basic safety net concerns, not just the medical research and rehabilitation reimbursement system.
- There is a need fo National Post Secondary Program Standards for College Programs for Adult Students with Brain Injury.
- The there is a need for Mandated Reporter National Legislation for college employees who work with adult students with tbi who are attending college.
- There is a need for a consistent definition of the terms “traumatic brain injury” and also “acquired brain injury.”
- There is a need for strict adherence online to already established guidelines in re human research.
- There is a need to deal with the emergence of troubling patient data harvesting and other privacy violations in some social communities online.
- There is a need for the creation of a medical category entitled “Post-TBI Syndrome.”
- There is a need for survivor councils and/or survivor participation on Boards of Directors of brain injury associations and other so-called survivor advocacy organizations.