Survivors as Stakeholders in the Public Policy Debate
November 30, 2009
Firstly, we are the most important stakeholder in our own affairs and community.
We survivors here at the all-survivor Brain Injury Network are advocates for our brain injury survivor community. We decided to become vocal about our issues, because too many agencies that are supposedly there advocating for us and in our name have failed to adequately address many of our issues. We have developed and published position statements in the form of policy pronouncements regarding many topics. We talk about "public policy and advocacy" as many organizations do, because we want the the government sector to reflect the sorts of policies that we think are important and helpful to us.
The government sector goes about discussing and formulating public policy regarding brain injury matters. Well, so far we haven't seen the government sector properly addressing many of our issues or crafting adequate public policies on our behalf. So, we have crafted these policies ourselves in the hope that government policy makers will read what we say, and perhaps actually utilize some of these ideas when they craft policy that has to do with us. We also want additional stakeholder organizations to take note of these issues and champion what we consider to be important policy issues for the brain injury survivor community. Seeing as how we haven't seen these issues properly addressed by anybody in at least the twenty years we have been studying brain injury policy, well, this should explain why we took it on ourselves to write public policy pronouncements.
Just to highlight, here are some of the many issues that we are addressing:
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 for 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.
In conclusion, we are interested in advocacy, human rights, and political action. Please view our public policy advocacy section to read further about our issues. And if you are a survivor and you want to become a survivor advocate for the brain injury survivor community, please come join with us on our policy and advocacy forum, the SABI