Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of Brain Injury Network 12-11-10
The Board of Directors of the Brain Injury Network approved these positions of public policy:
1.Post-Acute Medical Environments, Assisted Living Facilities and Nursing Home Placements for People with Brain Injury; Use of Psychotropic Drugs; Quality of Life Issues: Some people with brain injuries live in dependent situations such as post-acute medical environments, assisted living facilities or nursing homes. They are entitled to non-pharmaceutical and psychosocial programming and interventions whenever possible. Pharmacological psychotropic treatment and care should not be emphasized over alternate therapies.
People with brain injuries in facilities must have meaningful human contact, appropriate ongoing assessments, and opportunities to make choices (for example, as to what they will wear, read, or listen to on the radio). Additionally, patients or residents should have formal activities, exercise and mental stimulation as part of their daily routine. Patients recovering from brain injury in these environments should have physical, cognitive, occupational, speech and other therapy as needed.
Structured living environments designed for people with brain injuries should shy away from a rigid, institutionalized medical model and to a more homelike environment. Design should emphasize privacy and ensure maximum mobility for patients or residents.
Staffing levels and staff training in said facilities need to be commensurate with patient or resident load and patient or resident issues. Staff should have appropriate and ongoing training on how to work with individuals who have sustained brain injuries. Staff should be adequately supervised.
As previously stated, the first choice in managing patients or residents in such environments should not be the utilization of anti-psychotic drugs to control the person. If the person is exhibiting antisocial or puzzling behaviors a complete and appropriate medical assessment should be made to try to determine the reason for the behaviors. Therapies that involve the use of "off-label" psychotic medications to dull (or which dull) the patient should be used only as a last resort. (In the United States, off-label use means using the medication for any purpose that is not specified in the labeling approved by the U. S. Food and Drug Administration.) Patients or residents put on these medications generally will experience a further cognitive decline. It has been established in research studies that excessive use of tranquilizers will also cause a general health decline or even death, so such medications should only be used as an absolute last resort when other options have failed or are medically impossible. It is an abuse of people with brain injuries to routinely drug them with antipsychotic drugs as a way to keep them compliant and manageable. It is a way facilities keep costs low. It is wrong.
Because of this circumstance and other factors, there needs to be more oversight of environments and facilities created specifically or used occasionally for people with brain injuries (example: nursing homes). It would be better for people with brain injuries to live in environments where they live with other people of similar age. In other words, it is not a very good idea to put younger people in facilities that are usually meant for the senior population, but it happens all of the time.
In the best of all worlds there would be affordable facilities and living arrangements available everywhere for people with brain injuries. There are millions of people in the USA with brain injuries, many of whom cannot live independently. More attention really needs to be paid to appropriate dependent living environments. The ultimate goal, where possible, is to return the individual to an independent living environment. However, this is not possible with many people, so dependent living facilities should maximize the quality of life experience for the residents.
2. Privacy Settings on Web Sites Designed for Brain Injury Survivors:Websites often have several privacy settings ranging from totally open access (in which case all content can be viewed by third parties) to private access (in which case no third party is supposed to be able to view content). Sites catering to people with brain injuries ought to have their privacy setting defaults set to maximum privacy. Then, if the survivor wants to change the setting to less privacy he or she can take steps to accomplish that.
Many people and organizations that are starting up online groups for people with brain injury do not know about the privacy settings, etc. Administrators in online communities in places like Facebook and Yahoo Groups have the capacity to set more private settings on behalf of all of the participants, but most do not do so. By and large, unfortunately, privacy defaults are generally “open access.” The open access setting (share all content with third parties, etc.) is the one that most compromises privacy.
Some websites purposely do not offer any privacy options at all to the user, and these types of sites probably ought to be avoided as a general rule, because chances are the web administrator is allowing total open access to all third parties. Also, chances are that the site is also archived in Google and other search engines. This means the content posted by participants will be public and what is more will be stored in a public archive that may be on permanent view.
Web sites that offer several privacy settings to the user with one setting to maximum are to be commended, but only if the default is the maximum privacy setting. If the default setting is one that permits open access and third party (stranger) viewing, but additional settings that offer more privacy, that is not good enough. Yes, the participant may, at his or her discretion, change the privacy setting to more privacy but that is insufficient, because some people with brain injuries are not going to realize that they ought to set privacy to a higher level for their own protection. Also, certain people with brain injuries may not be able to figure out the steps they must take to make their participation more private. Therefore the best site is the one that starts with the privacy settings already set by default to maximum privacy. Maximum privacy does not permit third parties to view participant’s content.
Maximum privacy default settings best protect the site user from hackers, identity thieves, spammers and other third parties who really have no business snooping into the private affairs and personal data about people.
Site administrators should do everything possible to minimize potential security threats to their participants. Maintaining maximum privacy default settings for site users is one thing caring and responsible site administrators can furnish if they operate online brain injury social support communities.