Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of Brain Injury Network 10-18-2008
The Board of Directors of the Brain Injury Network approved these positions of public policy:
1.A Recognition: Attention to Safety must be the most important consideration for any program or process that involves people with brain injuries.
2.Advocacy Agencies for People with Brain Injuries: Agencies professing to be consumer advocacy agencies for people with brain injuries must have a 25% minimum survivor participation on their board of directors.
3.Banks and Other Financial Institutions: Banks and other financial institutions should be required by law to report any suspicious bank-related activity regarding their patrons when it is known to the bank that the patron is or may be cognitively impaired. This is a mandated reporter requirement. An example would be if a person without any professional credentials and unknown to the bank appears at the bank with a person who is clearly cognitively impaired and the third party seeks to be made a co-signer on the bank patronís account. Such an event would trigger the bankís responsibility to report said suspicious activity by the third party to the appropriate authorities.
4.Building Code Standards: We encourage building codes that mandate standards of accessibility that will allow persons with disabilities and seniors to age in place. (Some useful standards that will help people with brain injuries include requiring wide door widths, entrance and exit sloping that will allow for ramp capacity, building handle bars in showers, etc.) We would like to see all of these features incorporated into all residential building codes.
5.Crime:Survivor-on-survivor crime should not be ignored by institutions of higher learning, schools, non-profit institutions, medical facilities, day-care centers, law enforcement, the judicial and criminal justice system, or anyone else in society.
6.Doctor Education: We encourage doctors and other medical service providers to learn about disseminate information about the constellation of local services available in their own communities that will help people with brain injuries. 7.Drug Manufacturers:We would like to see drug manufacturers have a duty to report adverse findings in a timely fashion. Drug companies must release negative findings, discovered contra-indications, research, etc. about their medications in a timely fashion. Drug companies should be required to report any findings that would adversely affect patients with brain injuries immediately to government overseers (FDA) and the FDA should broadcast information to the public immediately.
8.Fluorescent Lighting: Where fluorescent lighting is mandated by law, there should be a waiver of any requirement to use fluorescent light bulbs if a survivor is bothered (headaches, seizures, etc.) by such fluorescence.
9.High School Graduation:We do not think that young people who suffer a brain injury close to their graduation from high school should be encouraged to graduate with diploma until it is clear that they have not suffered the kind of brain injury that would entitle them to numerous special education and life transition, sometimes life-long services, if they had not graduated and were instead placed in special education.Sometimes the granting of a high school diploma prevents a young person with a brain injury from securing additional services he or she might have been entitled to but for his or her diploma. Therefore, high school graduation with diploma after a serious brain injury should be carefully weighed against other options and services. We feel that school districts should be required to explain this to the family of the young student prior to encouraging standard or accelerated diploma for a student with a serious brain injury.
10.Hospital Privacy:Regarding privacy, there should be no photos in hospital settings of people with brain injuries without their express, written consent.
11.Hospital Settings and Patients: If a person is unconscious or minimally aware in the hospital, medical staff should not have a discussion with the personís family at the bedside in which the staff discusses a negative prognosis. Said discussion should take place out of the earshot of the patient. (Even though the patient might appear unconscious, the patient might actually be capable of hearing and understanding any conversation within his or her earshot.)
12.Human Research Guidelines: All service providers and research institutions must follow the already established U. S. government human research and privacy guidelines. Any Internet site in the business of conducting research about the brain injury community or its members should make very clear and in a conspicuous manner on the homepage of the site any business or research affiliation of the site. There must be a conspicuous, full disclosure of any research activities on the site and researchers operating the site must seek permission of any participants with brain injuries in such a site.
13.Identification:Use People First philosophy.Refer to the survivor as a person first with reference to his or her brain injury condition second. Refer to people with brain injury as person or people with brain injury or survivor or survivors of brain injury. Do not use terms such as brain injured people, brain damaged people, brain injured students, victims of brain injury, etc.Person with braininjury or people with brain injury is the preferred terminology. Do not label survivors as we are braininjured, we are tbi, we are stroke, etc. Do not refer to survivors as victims of brain injury except in special circumstances that relate to additional circumstances. For example, if someone sustained his or her brain injury in a criminal assault, then he or she is, in addition to being a person with a traumatic brain injury from assault, the victim of crime. If the person sustained a brain illness while living in an impoverished, unsanitary, squalid environment then the person is a victim of poverty. If it has been adjudicated that someone sustained a brain injury due to medical malpractice, then the person is someone with a brain injury who is also the victim of medicalmalpractice. Note that in these contexts, the person is not a victim of brain injury; the person is a victim of crime, poverty, malpractice, etc.
14.Law Enforcement: Sheriff and police and other law enforcement jurisdictions must provide training to their personnel regarding how to deal with survivors of brain injury.
15.Local and County Community Government Services: Local and county governments should provide workers who will help persons with cognitive problems fill out paperwork at the local government office.The government agency should have an affirmative duty to make its ability to provide such help known to any potential client.
16.Living Environments: We would like people with acquired brain injuries who cannot live independently to be able to live in the least restrictive environment with age-appropriate living companions. For example, we would like younger people who must live with assistance to have available living environments other than nursing homes which serve mostly senior citizens.
17.Post-Secondary Education: We are seeking the establishment of national standards for post-secondary programs that serve students with brain injuries. We also want a mandated reporter law for post-secondary institutions with programs for students with brain injuries. Under this law college level personnel will be required to report any criminal conduct against any of their adult students with brain injuries to local law enforcement.
18.Privacy On-Line:Service providers should not associate with on-line social communities for people with brain injuries when said social communities do not attempt to protect the privacy and confidentiality of medical information about people with brain injuries. There are often clear signs when Internet site developers are not protecting the privacy of survivor participants. For example, when an Internet site developer sets up a social community on-line for survivors, asks for and publishes confidential information and medical information about the participants (for example, name and address of the participant, doctorís name, medication list) this should be a red flag and not permitted or encouraged. Especially egregious is if the site is public access and there is a public archive with survivorsí private, confidential information.The fact that certain survivors volunteer such information should not absolve service providers from their duty to keep such information confidential and secured in some manner. This is because some survivors lack judgment to recognize the security risk of volunteering such information on a wide-open Internet website.
Additionally, other service providers should not associate with (link to) on-line social communities for people with brain injuries when said social communities operate a public access Internet site and make no attempt to conceal the identifying information about people with brain injuries, and/or do not caution participants to consider protecting their private confidential information on-line. Service providers should also not connect with on-line communities that seek out and publically post private confidential medical information about the people with brain injury.Any sites that are operated under contract or via grant from the U. S. government should be required to follow privacy protocols or else lose any government funding secured to help operate such on-line social communities for people with brain injuries.
19.Removal of Life Support: In the absence of a living will to that effect by the patient, hospitals and ethics committees of hospitals should not have the authority to arbitrarily remove life support from a patient. If there is no written patient directive, the hospital should be required by law to seek and get the approval of the next of kin to remove life-support.If the legal next of kin objects, ethics committees of hospitals should not have the authority to remove life support from said patients.
20.Survivor Stories in the Media and on the Web: We caution families to think twice about releasing detailed information about their family member with a brain injury in the form of photos, stories, confidential information, etc. in newspapers, on the Internet, or in any other means of public distribution. It may be better for the person with the brain injury in the long run if his or her story is not broadcast all over the airways, the news media or the Internet. But this is for each family to decide. And if and when the person with the brain injury is ready, he or she can share whatever information he or she thinks is warranted.
21.Terminology: We would like to see consistent definitions as to the nature of the terms Acquired Brain Injury (ABI) and Traumatic Brain Injury (TBI) across the educational, governmental, legal, medical, and larger community. For example, in some medical quarters ABI and TBI are interchangeable terms. In others, ABI is defined as hypoxic or stroke-related, not TBI related. Some authorities add degenerative disorders into the definition of ABI; others specifically exclude such disorders from the definition. The various interpretations of the term acquired brain injury are causing confusion for people with ABI. The Brain Injury Network uses the following definition for ABI: An acquired brain injury (ABI) is an injury to the brain, that has occurred after birth, but is not related to congenital defect or degenerative disease. Causes of ABI include (but are not limited to) hypoxia, illness, infection, stroke, substance abuse, toxic exposure, trauma, and tumor. ABI may cause temporary or permanent impairment in such areas as cognitive, emotional, metabolic, motor, perceptual motor and/or sensory brain function.
22.Universal Health Care:We encourage the establishment of a national system of health care that sees to it that all citizens in the United States of America have health insurance.
We also encourage the establishment of universal health care in all nations of the world.