Advocacy by and for People with ABI (Acquired Brain Injury)
Brain Injury Network News
12-12-11 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce one new public policy was approved by the Board of Directors 10-16-11. The board members are brain injury survivors. The new policy involved the following topic:
10-27-11 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce one new public policy was approved by the Board of Directors 6-13-11. The board members are brain injury survivors. The new policy involved the following topic:
6-11-11 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce one new public policy was approved by the Board of Directors 3-12-11. The board members are brain injury survivors. The new policy involved the following topic:
1-1-11 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce the following press release.
SOURCE: Brain Injury Network
Jan 11, 2011 11:11 ET
Brain Injury Network Announces the Human Rights Issues and Concerns of People With Acquired Brain Injury From Traumatic Brain Injury (TBI), Brain Cancer, Brain Illness, Stroke, and Other Forms of ABI
People With Acquired Brain Injuries Consider Their Human Rights and Their Basic Human Safety Net to Be Their Most Vital Issues
SANTA ROSA, CA--(Marketwire - January 11, 2011) - The Brain Injury Network, an all acquired brain injury survivor organization (founded 1998), has announced human rights issues important to the ABI survivor community. BIN is a USA national and international organization promoting ABI survivor collective advocacy, citizen action and human rights. People with ABI at BIN have developed a collective consciousness and have articulated many issues that need public declaration. BIN is disseminating a consumer driven policy platform. We request that other policy advocates emphasize our recommendations and work for laws, standards and procedures that will protect vulnerable people who have ABI.
"The most important thing to us is our human rights, not our role as patients or research subjects. We wish to be perceived as human beings with the same rights and desires to live safely, with the protection of law, and with the same respect and dignity that other people have," said Susan C. Hultberg, President and Executive Director of the Brain Injury Network and brain injury survivor. "Our membership has stated repeatedly that our main concern is our basic human rights and the basic human safety net. This means basic shelter, food, and medical care. It is our position that the basic human safety net for a person with incapacitating cognitive and/or physical disabilities after brain injury is even more important than community reintegrative retraining programming." http://braininjurynetwork.org/humanrights.html
BIN is also concerned about safety, privacy, and confidentiality concerns for people with ABI, especially individuals with brain injury who participate on Internet social communities. Web administrators of social communities for individuals with brain injuries should set privacy defaults to maximum and not allow public archiving of participants' posts in search engines.
Additionally, medical, legal, government and other venues should use consistent definitions of ABI and TBI. Medical authorities should create a Post-Traumatic Brain Injury Syndrome (PTBIS) traumatic brain injury medical classification. PTBIS is an umbrella term being circulated by BIN to medical authorities in the hopes that they will utilize this new medical classification.
Other policy statements and guidelines of the Brain Injury Network may be viewed on its website at http://braininjurynetwork.org
Brain Injury Network Announces Human Rights Issues and Concerns of People with Acquired Brain Injury from Traumatic Brain Injury (TBI), Brain Cancer, Brain Illness, Stroke, and other Forms of ABI (continued)
BIN has many recommendations for society, the medical community, and brain injury policy advocates including the following:
1. Advocates for people with brain injuries ought to remember that as advocates they must put the needs of people with brain injuries ahead of any other interest, including any business interest.
2. Secure funding and provide programming so that incapacitated, fragile people with a brain injury have their basic human and safety needs (food, shelter, basic medical care) met. These should be the most important funding priorities for advocates and the government. After the basic needs are met can come the focus on additional specialized programming, such as research and cognitive training.
3. Create a post traumatic brain injury syndrome (PTBIS) brain injury medical classification. PTBIS is an umbrella term being circulated by BIN to medical authorities in the hopes that they will utilize this new medical classification, because currently there are just too many terms in use relating to traumatic brain injury and none have the depth and breadth (comprehensiveness) of a PTBIS classification.
4. Utilize in medical, legal, government and other venues consistent definitions of ABI and TBI. There is inconsistency in the definitions currently used by some prominent authorities, and this is causing confusion in the brain injury survivor community.
5. Advocates for the brain injury community must fully disclose any conflicts of interest, for example, affiliation with other stakeholders, such as patient research study recruitment companies or employment with particular rehabilitation facilities. Also web site administrators should fully disclose the nature, purpose, funding sources and privacy settings of their social communities for people with brain injuries. Most especially they should disclose if they are conduct “patient data harvesting” and/or allow participant content to be publically archived in the search engines.
6. Instigate national and international standards for postsecondary (college) programs for disability resource department programs for adults returning to school after brain injury. BIN has published numerous guidelines on this topic.
7. Develop more age appropriate placements for those young people with brain injury who cannot live independently than nursing homes that mainly accommodate seniors. Many young people with brain injuries are able to live independently, but for those who cannot, something besides nursing homes should be available.
8. Emphasize non-pharmaceutical and psychosocial programming and interventions whenever possible (attention to quality of life and daily activities) and de-emphasize pharmacological psychotropic treatment and care for people with brain injuries who live in dependent living situations such as assisted living facilities and nursing homes.
9. De-emphasize head contact sports such as football, soccer, rugby and boxing in schools and even society at large. Minds, and especially the minds of youth, are a precious resource. Society should deglamorize sports activities that can harm children.
10. Only medical doctors, not merely coaches, teachers, or other school personnel, should conduct any medical assessments when a student sustains a concussion or other form of brain injury when at school.
11. Ensure that people with acquired brain injuries have adequate and ongoing access to medical care including any kind of cognitive, speech, occupational, physical therapy necessary.
Sue Hultberg, M.A. and J.D. President and Executive Director, Brain Injury Network (1998-2011) TBI Survivor (1985)
1-7-11 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce that several new public policies were approved by the Board of Directors 12-11-10. The board members are brain injury survivors. The new policies involved the following topics:
9-7-10 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce that several new public policies were approved by the Board of Directors 09-04-10. The board members are brain injury survivors. The new policies involved the following topics:
These guidelines are posted on the Brain Injury Network web site under the Public Policy Index Section. Thus far the Brain Injury Network has adopted over 70 public policies that involve issues of importance to the brain injury survivor community.
9-7-10 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce that several new public policies were approved by the Board of Directors 06-12-10. The board members are brain injury survivors. The new policies involved the following topics:
These guidelines are posted on the Brain Injury Network web site under the Public Policy Index Section. Thus far the Brain Injury Network has adopted over 70 public policies that involve issues of importance to the brain injury survivor community.
6-10-10 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce that several new public policies were approved by the Board of Directors 03-11-10. The board members are brain injury survivors. The new policies involved the following topics:
These guidelines are posted on the Brain Injury Network web site under the Public Policy Index Section. Thus far the Brain Injury Network has adopted over 60 public policies that involve issues of importance to the brain injury survivor community.
5-6-10 The Brain Injury Network, a USA national and international nonprofit organization operated for and by ABI (which includes TBI) survivors, has prepared a list of criteria that will help survivors assess (evaluate) online brain injury social communities. The article on the subject is available on the BIN website under the section Online Community.
3-19-10 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce that several new public policies were approved by the Board of Directors 12-28-09. The board members are brain injury survivors. The new policies involved the following topics:
These guidelines are posted on the Brain Injury Network web site under the Public Policy Index Section. Thus far the Brain Injury Network has adopted over 50 public policies that involve issues of importance to the brain injury survivor community.
12-05-09 The Brain Injury Network, a USA national and international nonprofit organization, is calling for the medical community to adopt a brain injury classification entitled "Post Traumatic Brain Injury Syndrome". See also the Dear Medical Community article and the Post TBI Syndrome Public Policy section.
12-2-09 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce that several new public policies were approved by the Board of Directors 09-12-09. The board members are brain injury survivors. The new policies involved the following topics:
9-14-09 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce that several new public policies were approved by the Board of Directors 6-13-09. The board members are brain injury survivors. The new policies involved the following topics:
6-14-09 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce that several new public policies were approved by the Board of Directors 2-20-09. The board members are brain injury survivors. The new policies involved the following topics:
2-22-09 The Brain Injury Network, a USA national and international nonprofit organization, is pleased to announce that several new public policies were approved by the Board of Directors 10-18-08. The board members are brain injury survivors. The policies involved the following topics:
