Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of the Brain Injury Network Policy dated 12-28-09
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.