Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of Brain Injury Network 6-13-2009
The Board of Directors of the Brain Injury Network approved these positions of public policy:
1. Advocate Competency: People, and this includes survivor "advocates," who operate survivor support groups or organizations or social communities for survivors of brain injury should have professional level training in some field related to brain injury.
2. Advocates: Disclosure of Business Interests: Advocates for people with brain injuries who work for nonprofit advocacy organizations should disclose any other work or employment affiliation that they might have (with rehabilitation facilities, hospitals, legal firms, clinical trial registries, U.S. government or local, state or federal agencies) in order that the possibility of any conflict of interest between their work as advocates for people with brain injuries and their work as proponents for some particular provider entity be known.
3. Bicycle Helmet Law: We amend our previous policy dated 2/20/09 regarding bicycle helmet law to extend our recommendation to adult riders. Helmet Laws: We favor helmet laws for motorcyclists. We favor mandatory helmet use for adults and children (persons under the age of 18) who are on bicycles and skateboards.
4. Classification of (TBI) Brain Injury to that of a Disease: If a reclassification of (TBI) brain injury from an injury classification to a disease classification will result in additional needed services for people with brain injuries, then, if the larger medical community reaches a consensus that this is a medically sound classification, we are not opposed, as long as this reclassification does not result in any further stigmatization of people with brain injuries and does not cause any reduction or loss of services to people with brain injuries.
6. Counselor Training: Best practice must dictate that counselors and psychologists counseling people with brain injuries have, in addition to general training in counseling, specialized training in "brain injury" and "brain injury rehabilitation."
7. Department of Mental Health: The appropriate department for rehabilitation or community reintegrative services should not be a Department of Mental Health. Brain Injury includes more than "mental health" issues. It includes physical, perceptual-motor, somatosensory and other issues. We are concerned that Departments of Mental Health do not have sufficient institutional expertise about brain injury, nor do they employ persons with sufficient expertise about these additional aspects of brain injury, to properly implement, oversee or execute brain injury community reintegrative or rehabilitation programs.
Additionally, we have noted that in the last U. S. Department of Health and Human Services Health Resources and Services Administration (HRSA) grant cycle out of all of the Traumatic Brain Injury Implementation grants (34 states and the District of Columbia) only one grant was to a state Department of Mental Health (that state being California). Most of the other grants were to Departments of Health, Departments of Human Services, Departments of Rehabilitation Services, Departments of Public Health, and the like.
Any department having oversight responsibilities for brain injury programs should have staff trained in all aspects of brain injury issues, not just mental illness or mental disorder training.
8. Funding Priorities for Survivors: People's lives are saved in hospitals, and medical research and programming is very important to save lives and enhance outcomes. But life for survivors goes on well after they leave the hospital. The survivor might spend a month or several months or even a year in a hospital acute and then subacute facility. However, thereafter a survivor many live out a normal life span. This could mean thirty, forty, fifty or more years. Although medical (in hospital and rehabilitation settings) interventions are vital, community reintegrative programs are also important to brain injury survivors. Please recognize that supports for day-to-day living once the survivor leaves the hospital setting are also essential. Sometimes these supports are required for a life-time. Funding for these community programs is also essential.
9. Least Restrictive Living Environment: Every effort should be made to place people with brain injuries who cannot live independently in the most appropriate and least restrictive living environment. That means people with severe brain injuries should be able to live in environments with people in their own age brackets. For example, younger people should not be placed in nursing homes for seniors.
10. Mandated Reporter Law: National (and international) legislation applicable to college and other post-secondary institutions is needed to mandate reporting requirement for Boards of Trustees, administrators, faculty, staff and others who operate post-secondary level programs for adult students with acquired brain injuries. Please see our extensive section on this topic.
11. Medical Device Makers - Reporting Requirements: BIN encourages greater transparency about relationships between physicians and medical device makers. Medical device makers should disclose all payments to physicians (consulting fees, royalties, honoraria for physicians, fees for clinical trial design, counsel for education and training, administration and product design, safety design, etc.)
12. Mental Illness: Brain Injury is not per say a "mental illness."
13. Physician Disclosures: Physicians (doctors) should disclose to patients all financial partnerships they have with medical device makers and/or drug manufacturers.
14. Psychologist Training: Best practice must dictate that counselors and psychologists counseling people with brain injuries have, in addition to general training in counseling, specialized training in "brain injury" and "brain injury rehabilitation."
15. Post-Secondary Programs: National standards are required for post-secondary programs for adult students with brain injuries. One of the few places adults can find a low cost form of rehabilitation is in college disability resource programs. But students with brain injuries cannot be automatically treated as though they are ordinary students. The presumption in this instance must be that, because of potential cognitive and physical issues, students with brain injuries require protections. Programming must be appropriate for people who are recovering brain function after brain injury. College personnel must be accountable for their disability programming. Please see BIN's extensive section on this topic.
16. Post-TBI Syndrome Diagnosis, Research and Treatment: We would like the medical community to adopt this rarely cited syndrome as a viable diagnosis and we encourage research and treatments for this condition.
17. School Age Children with Acquired Brain Injury: School age children suspected of having experienced an acquired brain injury (which includes concussion and/or tbi) should be evaluated by a medical doctor. Subsequent to injury and with continuing medical supervision, such students should also be evaluated and monitored by school psychologists. Students who have sustained acquired brain injuries should undergo extensive assessment within the school system to establish the extent of their brain injury issues. Students with suspected brain injury (even apparently "minor" concussion) should not be readmitted to sports events or programs without the express concurrence of a medical specialist. See also the High School Graduation position statement.
18. Skiing and Helmets: (Helmet Usage When Skiing or Boarding): BIN urges skiers and riders to wear a helmet and to ski or ride snow boards responsibly. BIN favors the adoption of a mandatory helmet law to be applicable to all skiers and snow boarders.
19. Survivor Social Communities On-Line: Social communities funded by or operated by medical or other service providers (doctors, psychologists, university researchers, etc.) should not hold themselves out as "survivor sites" operated by "users," "consumers," or "survivors". Examples would be for-profit or government-sponsored sites such as "wearetbi.org". If an online social community receives its funding to operate from a department of government such as the Department of Defense (example: "brainline.org") this source of oversight, funding and control should be clear on the website.
Participants (people with brain injuries) have a right to know if their on-line "survivor" social community is being monitored by researchers. Participants have a right to know if information about them is being harvested for any purpose, for example, for surveillance, data collection, behavioral research, medical research studies, or medical clinical trials. Participants should be advised that their participation in a social community has made them a part of a research study.
Full disclosure of the funding and purpose of an on-line social community should be prominently displayed on the homepage of the social community site. Of particular interest would be these potential scenarios:
* A purpose of the community is to solicit participation of survivor participants in clinical trials.
* A purpose of the on-line social community is to conduct research on survivors.
* The source of the funding for the "survivor" social community is a medical provider, a drug company, the government, or a for-profit business interest.
* Data about participants in the on-line forum is being harvested for research studies, government surveillance, databases, etc.
* The site, site traffic and messages are being monitored by researchers.
* The site represents an aspect of a research project.
Participants on such social community sites should be fully informed as to the full nature, purpose and activity of the site. The particulars as to who is conducting the research and who is paying for the research must be indicated. Researchers must seek and get express approval from each participant who they are monitoring, researching or including in databases. Site administrators and researchers should disclose any underlying rationale for the social community, such as efforts to harvest survivor names, addresses, medical conditions, etc., for the purpose of placing the survivor in a database or potentially securing that person to participate in a medical or other research clinical trial.
20. State Brain Injury Survivor Councils: Every state should have a state survivor council. The public should have access to state survivor councils. Please make contact information to access state survivor councils available online.
States should publish the names of the members of any state (brain injury) survivor councils. We ask that all survivor councils have actual survivor participation. Surely every state and every agency responsible for setting brain injury survivor policy can enlist survivors who have the ability, knowledge and experience to serve on their councils. The presumption in this instance must be that there are some survivors of brain injury who are competent, who can think, who can serve, who wish to serve, and who can be located and encouraged to serve on such councils. We encourage survivor councils with survivor participants in non-profit associations as well.