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Promoting Brain Injury Survivor Self-Advocacy and Collective Advocacy

Position Statements and Public Policy

Susan C. Hultberg, president of the Brain Injury Network, an international and U.S. national advocacy organization for people who have sustained brain injuries, is pleased to announce the publication of her new book entitled Brain Injury Advocates: The Emergence of the People with Acquired Brain Injury Human and Civil Rights Movement. The book is currently available for purchase at the following link:
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This is the first ever USA national and international brain injury (abi which includes tbi) survivor policy and collective advocacy online forum. This online social community has developed, implemented and disseminated public policy on behalf of the brain injury survivor community since 2006. Everyone involved is a brain injury survivor and a brain injury survivor advocate. This is also a chat; peer support; information, education and referral online social community. This group is survivor operated and survivor-led. The owner/moderator is a tbi (traumatic brain injury) survivor. SABI is affiliated with the Brain Injury Network, a Section 501(c) (3) nonprofit advocacy organization and network operated by and for survivors of brain injury. Topics discussed include survivor priorities, brain injury survivor human rights, best practices for service provider organizations, government public policy, problems with insurance, community access, health care costs, basic safety-considerations, patient empowerment, patient advocacy, community reintegration, post tbi, Post TBI Syndrome, assistive devices, medical research standards, privacy and safety on the Internet, assessing social communiities, standards for college programs for students with brain injury, sport injuries, children and brain injury, school and brain injury, and a host of other topics.
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Brain Injury Network Policy dated 9-8-13

We find it highly objectionable and unethical that certain attorneys are seeking out individuals with acquired brain injuries (from tbi, etc.), are enticing them to publically share their stories on the attorneys’ websites and blogs, and are further distributing said stories to other social media such as Facebook and YouTube. Also: The Attorney-Client Relationship. Informed Consent and Mental Competency. Commercial Solicitation for Attorney’s Business Services. Recommendations to the American Bar Association (ABA), the State Bar Associations, Ethics and Professional Conduct Advisory Committees, and Legal Ethicists.
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August 1, 2006: Brain Injury Network (BIN) is calling for a system of regulation, review and standards nationwide for utilization in college and other post-secondary disability programs. The Brain Injury Network, a survivor-led and operated association of people with acquired brain injuries from traumatic brain injury (tbi), stroke, tumor, illness and other abi categories, is advocating for national standards for acquired brain injury programs at colleges and universities. Indeed, international standards are needed. But since the Brain Injury Network originates in California, U.S.A., we are first calling for standards to be implemented in the United States of America.... It has dawned on us that new laws are needed to protect adults with cognitive challenges who attend colleges all across the United States.
Regulation, Review and Standards For College and Other Post-Secondary Level Disability Programs Are Needed
National Standards
Regulation of College Disability Programs
Review of College Disability Programs
Public Access to Information about College Disability Programs
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Article on Brain Injury Advocacy from the Brain Injury Network web site. BIN is an abi survivor advocacy organization.
"We also believe in collective-advocacy by and for our survivor community. Collective-advocacy is the process by which we people with acquired brain injuries organize, formulate, collaborate, reach consensus and articulate for our collective survivor community's interests.... Our advocacy reflects our concerns and spells out some particular policies and protocols that we believe will be in the best interests of our community. Please study our position statements. Please initiate and carry out policy that will promote our policy concerns. Thank you."
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In this policy statement dated 3-17-13 the Brain Injury Network affirms that individuals with acquired brain injuries have the right to maintain relationships with their minor children.
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The Brain Injury Network - ABI Advocacy by Survivors Cause on Facebook.
Please help brain injury survivor advocates raise public awareness about issues of importance to our survivor community.
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The survivor board of directors approved public policy position statements of the Brain Injury Network (BIN), a survivor advocacy US national and international organization. The organization has been operational in Santa Rosa, Ca. since 1998. Two key missions of the Brain Injury Network are to formulate public policy that will best serve people with acquired brain injuries and to advocate for said policies on a USA national and international level. The organization has developed over 70 policies on behalf of the brain injury community with more policies in development. Additionally, policy dissemination is an ongoing project of the Brain Injury Network. The entire focus of the Brain Injury Network is survivors of acquired brain injuries.
Policy Topics as of 6-15-11:

Safety First

Ability Rights
ABI (Acquired Brain Injury) Subclassification Hierarchy
Advocacy Agencies
Advocate Competency
Advocates: Disclosure
Assisted Living Facilities

Best Practice Guidelines
Bicycle Helmet Law
Building Code Standards
Brain Injury Community

Civil Rights
Classification of TBI
Clinical Research
Cognitive Retraining (also called Cognitive Therapy or Cognitive Training)
Community Reintegration (Reintegrative Services)
Comprehensive Health Reform
Conflict of Interest
Counselor Training

Department of Mental Health
Disability Rights and Issues
Disclosures, Advocates
Disclosures, Medical Providers
Disclosures, Researchers
Disclosures, Web Sites
Doctor Education
Drug Companies

Empowerment, Patient

Financial Institutions
Florescent Lighting
Funding Priorities for Survivors

Gold Standard Research Studies

Helmet Law
High School Graduation
Hospital Privacy
Hospital Settings
Human Research Guidelines
Human Rights

Identification as People
Incarcerated Criminals with TBI

Law Abiding Survivors (We are the great majority.)
Law Enforcement
Least Restrictive Living Environment
Legal Rights
Local and County Services
Local Services vs. National Centers; Costly Duplication
Living Environments
Locked Facilities

Mandated Reporter Law
Medical Device Makers
Mental Illness

National Centers; Costly Duplication
Nursing Home Placements

On-Line Networking Web Sites
On-Line Recruitment of Patients
Organizations or Providers Offering Money to People with Brain Injuries or the Families of People with Brain Injuries

Patient Data Harvesting
Patient Empowerment
Patient Recruitment and Covert Devices Online to Recruit Patients to Medical Research Studies
Patient Recruitment Methodology Online or through Social Media
Persistent Vegetative State (PVS)
Persistent Wakeful but Unaware State (PWUS)
Physician Disclosures
Post-Acute Medical Environments
PostConcussion Syndrome
Post-Secondary Education
Post-Secondary Programs
Post-TBI Syndrome Diagnosis, Research and Treatment
Privacy On-Line
Privacy Settings on Web Sites Designed for Brain Injury Survivors
Profiting from Exposing Brain Injury Survivors' Identities
Psychologist Training
Psychotropic Drugs, Use of
PTSD (Post Traumatic Stress Disorder)


Raising Money to "Promote" Medical Research
Recruitment Methodology
Removal of Life Support
Research Studies

School Age Children with ABI
Skiing and Helmets
Social Community and On-Line Networking Websites
Social Communities for People with Brain Injuries
Social Media
Societal Norms and Conventions
Sports or Athletics Activities: A Good Mind for Life is more important than a Trophy
Stigma and Brain Injury
Strokes are not TBI's
Subclassification Hierarchy of Acquired Brain Injury (ABI)
Support Group Facilitation
Survivor Advocacy
Survivor Advocates
Survivor Identity, Exposure of
Survivor Priorities
Survivor Social Communities
Survivor Stories in Media

TBI is a Subset of ABI
The Term "Survivor"
Third Party Stakeholders

Universal Health Care

Veterans, US Armed Forces
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Public Policy Statement of the Brain Injury Network dated 6-8-13

Prohibition on Use of Communication Devices While Driving or Bicycling

The Brain Injury Network supports laws everywhere that will help prevent acquired brain injuries. Driving, or operating vehicles (e.g. automobiles, buses, boats, tractors, trains, and scooters), or bicycling requires concentration. Driving while distracted leads to many serious and fatal accidents and therefore represents a substantial risk to public safety. People who use electronic communication devices while they drive, operate other conveyances, or bicycle are endangering themselves and the public at large. Leading causes of distracted driving include talking on handheld or hands-free phones and cell phones, and text messaging while driving.

Therefore we support any driving or bicycling distracted driver laws that prevent the use of handheld or hands-free phones or cell phones, and also other communication devices (e.g. text messaging electronic devices) that enable one to write, send, or read messages while one is driving a motor vehicle; operating heavy machinery, a boat, a ship, a train, a scooter, or other such motorized conveyance; or while one is bicycling.
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Fundamental Human Rights, Legal Rights, and Civil Rights for People with Brain Injuries; the Brain Injury Survivor Movement; Our Collective Identity and Common Purpose; the Human, Legal and Civil Rights Issues of People with Brain Injuries
Source: Brain Injury Network
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We at the Brain Injury Network survivor advocacy organization recommend the retirement of the term Persistent Vegetative State. In lieu of PVS, we ask that the medical community adopt the term “Persistent Wakeful but Unaware State” (PWUS). This term includes the requisite components of the diagnosis which are wakefulness yet unawareness. In the alternative, we have noted that on occasion the term Persistent Unaware State (PUS) is used, but it is not quite as illustrative as PWUS, in our lay persons’ opinion. However, it is clear to us, the brain injury survivor community that neither PWUS nor PUS would be so insensitive, dehumanizing or charged a term as PVS.
Source: Brain Injury Network
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The Brain Injury Network, a USA national and international nonprofit organization operated by and for brain injury survivors, is pleased to announce that two new public policies were approved by the Board of Directors 12-11-10. The board members are brain injury survivors. These are the policies people with brain injuries would like to see promoted by the public sector. This is a link to the policy entitled Post-Acute Medical Environments, Assisted Living Facilities and Nursing Home Placements for People with Brain Injury; Use of Psychotropic Drugs.
(Clicks: 117; Comments: 0; Listing added: Jan 8, 2011) Listing Details Report Broken  Listing
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