Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of Brain Injury Network 12-28-2009
The Board of Directors of the Brain Injury Network approved these positions of public policy: 1. Brain Injury Community: We regard the “brain injury community” as encompassing the fellowship of individuals who have sustained brain injuries. We survivors are stakeholders in our own affairs and the affairs of our community. We regard other “stakeholders” as being second party (family, friend, associate, neighbor, etc.) or third party (other individuals, groups, organizations or systems).
First party stakeholders (that would be we people who have sustained brain injuries) have the pre-eminent claim on our own affairs. We recognize, however, that others assert many claims on our community and on our affairs. Second party stakeholders generally have “a stake” in the affairs of one person in our community, that is to say, they have a stake in the interests of the person with a brain injury that they love or know. Third party stakeholders have a wider stake in our community’s affairs. The third party stakeholders have governmental interests, professional interests, business interests or altruistic interests. As a general rule, we recommend that survivors practice the art of dealing at arm’s length in any interaction with “third party” stakeholders.
2. Third Party Stakeholders: Examples of third party stakeholders in the USA include the national or federal government and its departments such as the Department of Health and Human Services, the Department of Education and the Department of Defense. It includes all fifty state departments of health, welfare, human services, rehabilitation, education, mental health and any others offering up programs for persons with brain injuries.It includes county and local governments offering programs such as adult day service programs, paratransit, information and referral services or basic human needs programming. It includes K through 12 schools and postsecondary education systems and institutions.
Third party business stakeholders include professional associations, medical networks, medical clinics, research facilities, rehabilitation hospitals, pharmaceutical companies, patient recruitment enterprises, medical device companies, insurance companies, nursing homes, assisted living facilities and psychological companies. Also included are private facilities, private schools, private nursing homes and the like. Also included are publishers or providers of books, journals, materials, software or web sites designed to aide brain injury survivors.
Third party interests also include individual service providers (sole practitioners) such as doctors, educators, psychologists, social workers, therapists, and counselors, etc. There are small groups and large networks of organized providers who provide paid services to members of the brain injury community. There are associations of various kinds of professionals. There are other kinds of business associations as well. Lastly there are also numerous non-profit agencies in the business of serving the brain injury community. Among examples of these would be public interest groups, welfare groups, churches and even online media outlets.
We know that some stakeholders wish to consider our community to involve them, and it does, but we survivors don’t consider these third party interests to be “part of our community.” We have to look at it a different way. In life people have their friends and family, and people also have interaction with the rest of society. There are different rules and social conventions in dealing with family and friends than there are in dealing with the rest of the world. It is a wise course for people with brain injuries, who might easily be taken advantage of, to follow the convention that we ought to regard third parties at arm’s length.We must safe-guard ourselves by being careful, diligent and cautious. It may not always be easy, and some of us, due to brain injury, have a tendency to “let our guard down.”Therefore, we must all practice the art of being careful.
The way for us survivors to best protect ourselves is to operate from the position that we are consumers-patients-students-clients etc. and we have a business relationship with these third party stakeholders. We may sometimes be lucky enough to have a very trusting, comforting, productive relationship with certain third party service providers. However, we must keep in mind that third party stakeholders are not family or friends, and although they work for our survivor community, they are not members of our survivor community.
As a general rule, we recommend that survivors practice the art of dealing at arm’s length in any interaction with “third party” stakeholders.
3. Survivor Advocacy: There is survivor self-advocacy and there is survivor collective advocacy within the Brain Injury Community. Some survivors are advocating individually. Some have organized and are collaborating in their advocacy work. For example, survivors affiliated with the Brain Injury Network, are advocating collectively. We work in concert on issues we have determined are important to the well being of our community as a whole. We at BIN sometimes call ourselves SABI’s. SABI stands for “Survivor of Acquired Brain Injury” and it also means “Survivor Advocate for (People with) Brain Injury”. In this position statement we are speaking about the survivor who has become an advocate.
4. What Makes a Good Survivor Advocate: We at the Brain Injury Network recognize that there are many survivor advocates working to help our community. What makes a good, or even excellent survivor advocate? In our estimation there are many factors which help make a survivor advocate a particularly valuable steward of and/or instrument of our community. Here are some attributes that are helpful.Many of us strive to demonstrate these qualities, because we know that having these qualities will help us be better advocates. But, like our policy agenda, these attributes are not always easy to achieve. They are goals in themselves. Perhaps all of them are not attainable by each and every survivor advocate, but these are qualities and/or credentials we each one of us can strive for, except the first one, which is to be a brain injury survivor. That one we didn’t want, but we have it nonetheless. If you can avoid being a survivor of an acquired brain injury altogether you can skip the rest of the list, lucky you. Here then are some qualities that help make an effective survivor advocate.
1.Survivor. A person who is a survivor advocate must have sustained a brain injury, the kind of brain injury that laid him or her low for quite some time. Generally speaking, a SABI did not spend an hour or two at the hospital after a slight bump on the head. No, a SABI is someone whose life as he or she had known it, was taken away due to the brain injury. SABI’s have spent months and even more likely years rehabilitating from brain injury consequences. SABI’s had lost their ability to think properly (to cognate) for long stretches of time, sometimes even months and years.SABI’s have had to dig deep, very deep, to determine their strengths, and their strengths have carried them through to new vistas.Also, SABI’s have had to develop strategies to overcome deficits. Let us just say that in life a SABI’s metal has been tested.
2.Acknowledgment of the Brain Injury. SABI people admit that we have had a brain injury. We don’t work cautiously and secretly behind the scenes for the community. We tell the world about our brain injury. We know that going public about personal injury will bring us some stigma, because in the current world many will judge survivors as being less, as being different or as being abnormal. But survivor advocates must take that trade-off in stride. We have to confront the stigma head-on. We have to show the world our face. We have to familiarize the world with who we are. We are people, and we have goals and objectives just like everyone else.
3. Brave.We survivor advocates will stick our necks out on issues that may be unpopular with other people, for example, third party stakeholders who are pursuing business interests over the interests of individuals with brain injuries. We will take a stand and fight for it to the best of our abilities. We will not shy away from controversy if the debate is going to benefit our community.
4. Careful. We survivor advocates are careful to act in a safe way. We will not jeopardize our health or the well being of ourselves or other people in our community.When we conduct activities or events we will put safety first for our friends in our community and for ourselves also. We will not put demands on our community that will tax our community or its members financially, physically, or otherwise.
5. Dedicated. Survivor advocates are compelled and motivated to work for our community. Sometimes that requires a bit of personal sacrifice. However, we recognize that we have a duty to work to the best of our abilities and to work diligently.
6. Experienced. The best survivor advocates have insight because we have a long track record of working for the community.
7. Integrity.SABI people are fair-minded and honest. We are people who have sustained brain injuries, but we still have the ability to make sound judgments and moral decisions. Some survivor advocates are even better able to follow the Golden Rule than some non-survivor human beings.
8. Knowledge Base. Survivor advocates seek out, study, and learn topics that have to do with our community. Where feasible, SABI people will gain technical level training in some field related to brain injury, in order that we have useful and accurate knowledge to share with the community or on behalf of the community.It might take extra years from the norm to gain that knowledge and training, but SABI’s undertake that anyway. It might be difficult to learn, remember and retrieve information from the mind sometimes. But there are those compensatory strategies, such as taking good notes, calendaring, and keeping as organized as possible that make it possible for many people who have sustained a brain injury to function once again.
9. Positive. Survivor advocates put a positive light on our situation wherever possible. SABI folk have the ability to use humor as well as logic to push for our positions. SABI people try hard to work with others to bring positive change to our community.
10. Respectful.SABI people are thoughtful and kind to others. SABI people listen to and value the opinions of other people with brain injuries. SABI people work together.
11. Vocal. Survivor advocates speak up and speak out for the community.
5. Best Practice Guidelines for Organizations that Serve the Brain Injury Community: The Brain Injury Network recognizes that many types of organizations operate programs to serve people with acquired brain injuries. We believe that all organizations need to utilize “best practices” when working with people with brain injuries. Here are some things we survivors want each and every program to have.
1. Accountability.It must be clear that there is someone in charge of the program and that it is not an informal operation. The person(s) in charge must act responsibility to correct any problems in program delivery.
2. Accessibility.Programs for persons with brain injuries must be carried out in accessible locations.
3. Best Practices. Organizations and programs must strive to utilize what is called “best practice” at all times. 4. Board of Directors. Every organization should have a Board of Directors or other responsible party to ensure that services and activities are properly carried out.
5. Competency.Organizations and programs for people in the brain injury community must be operated by trained personnel. Institutions offering brain injury programming must have institutional competency in endeavors related to brain injury. Individuals offering programming or working in a program must have suitable training and credentials in a field of study involving brain injury.
6. Complaint Process. People with brain injuries must have a clearly delineated way to complain, if they need to complain about some aspect of the program.If there is wrong-doing there must be a way to report wrong-doing. Participants must be instructed regarding procedures to complain.
7. Conflicts of Interest. Those who operate programs for persons with brain injuries must divest themselves of any interest that might go counter to the best interests of people with brain injuries who are in the program.
8. Ethics. The highest regard must be placed on ethical operation of the program.
9. Fiscal Responsibility. Every organization collecting money for its operation should practice fiscal responsibility with proper bookkeeping and other accounting procedures in place.
10. Input. Program operators should encourage and welcome input from survivor participants regarding program operation.
11. Insurance. The organization must carry insurance for the program.
12. Legal operation. The organization must be operated under the laws of the jurisdiction in which it operates.
13. Obeying the law. This also means knowing the law. Organizations should be sure to know any legal requirements for their operation.
14. Operating a safe program. There are many aspects to offering a safe operation. There must be insurance. There must be trained staff. Staff must be able to spot and deal with the physical, behavioral, perceptual or intellectual challenges that persons with brain injury might display. Staff background should be investigated prior to hire to ensure no one with a dangerous criminal record is hired. There must be adequate oversight of staff. There must be attention paid to accessibility issues.
15. Privacy. Every effort must be made to ensure the privacy of participants is protected. Photographs and other private information about participants should never be shared publically without the person’s express permission. If there is any doubt, any doubt whatsoever, as to the person’s ability to competently give such permission, information or photos about the person should not be shared. 16. Protocols. Operational protocols which protect must be implemented and followed. Many agencies with long track records, that is to say, EXPERIENCE, have already published protocols. It pays for novice organizations and professionals to study and implement said protocols. Protocols are there to protect and guide, not to restrain and suppress.
17. Safety. The number one concern is always safety. Every effort must be made to ensure that the operation is a safe one. It is better that there be no program than that it be carried out in an unsafe manner.
18. Staff training. The training the staff has must be commensurate with the type of program being offered. For example, medical programs needed to be staffed by people with appropriate medical training. Vocational training programs must be staffed by persons with appropriate training in vocational rehabilitation. Physical therapy programs must be staffed by persons with appropriate training in physical therapy.Additionally, there should be ongoing staff and volunteer training.
19. Standards.Program standards should be written. Every organization should have a handbook of its protocols and standards and these should periodically be reviewed and updated by trained, competent staff.