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What We People with Traumatic and Other Acquired Brain Injuries Need

June 22, 2009

The brain injury survivor community has some ideas of its own as to what is needed in the United States and around the world to optimize recovery and life in general for people with brain injuries. However, let us start with a discussion of how it has been up until now.
In the United States as it has stood, the determinations as to what is required by the brain injury survivor community have been made by service-provider interests. Chief among these are the medical providers. Federal government institutions such as the Department of Education, the Department of Health and Human Services, the National Institutes of Health, the Centers for Disease Control, and now the Departments of Defense and Veterans Administration, and many others, also lay claim to being advocates for us. Also, state government entities (e.g., Departments of Rehabilitation, Mental Health, Human Services) have also determined that they speak as advocates for us. The Brain Injury Associations also lay claim to being our advocates. They, however, also appear to be dominated by the medical community (especially particular medical rehabilitation centers and systems), but often also have a strong, legal (attorneys-at-law) element.
It is clear that institutions and agencies that have money (such as government departments, universities, and big hospitals) are able to make their interests regarding the brain injury community front and center. This is the most likely reason that whenever the agenda for people with brain injury is discussed or implemented, it is with the medical interests in mind. The federal funding continues to flow for medical research, clinical trials, and model brain injury medical programs that are operated by a few key hospital and/or university research systems scattered around the United States.
One problem with this state of affairs is that there are so many competing guidelines and models coming from various players: universities, researchers, hospital systems, governmental entities, local and state jurisdictions, and authors. There are literally thousands -- yes, thousands -- of entities just in the United States who have their own protocols, ideas, and models. There is strength in that because many ideas are being explored, but there is also weakness in that because there is so much to learn. No one can learn everything; that is true. Probably the best set of ideas is the one that will ensure that survivors have safe and productive lives.
Another problem with this state of affairs is that the actual day-to-day needs of people with brain injuries are getting lost or ignored because most of the focus is on the initial medical intervention. So, we will acknowledge that there is a flurry of activity revolving around people with brain injuries, at least when they are within the medical arena and they are acute and subacute level patients.
But beyond that, as survivors attempt to return to the community, and as they ultimately live out their lives as members of the brain injury community, there is much to be desired in terms of service availability and community supports. And when it comes to determinations as to the program needs of survivors, survivors themselves are often left out of the decision-making process.
Here are just a few of the things that we survivors would like to see: Every element necessary to maximize the quality of life for people who have sustained acquired brain injuries ought to be known by all of the key players. The various agencies delivering services to the brain injury community ought to work collectively to ensure the best system for us and a smooth continuum of care for us. Every entity formulating policy or providing services for our community ought to know what the others in related fields are doing. They ought to be working together, or at least aware of each other. For example, they ought to all be using the same definition of acquired brain injury.
Globally, we need a public policy that addresses our day-to-day needs, in other words, a policy that goes beyond the medical aspect. We need community reintegrative programs. We need programs that help provide social supports as survivors transition from the hospital system back into society. Most do not wish to be housed in nursing homes, but often that is the only available placement. Assisted living, paratransit, and in-home support are some of the topics on the minds of survivors as they try, despite severe disabilities, to return to and subsequently function in the community. Supports are needed and sometimes these supports are going to be needed for life. We also need decent transition services when young survivors are leaving the school system.
Internationally and nationally we need safe programs from medical and nonmedical providers. We need protocols that protect people with brain injuries from negligent, reckless, and occasionally even dishonest care providers. We need accountability in any service delivery systems designed to serve our community. Again, we need all of the players to work together to build the best system, and we need them to accept survivor input when they are designing programs for us. We do not appreciate federal, state, local, or other entity "TBI Councils," or "ABI Councils" that have no survivor members. Any council or board holding itself out as a council working on our behalf MUST have survivor representation.
We need agencies that accept and act upon input from our community. We need associations that do more than just hold walkathons and ask us to send them money. We need associations that have a strong day-to-day survivor presence on their boards of directors and survivor councils.
Regarding the medical aspect, we need the advanced medical and other rehabilitation programs to be in not just a few regional medical centers, but in every county in the country. Indeed in the best of all worlds, these medical and rehabilitative programs would be available all over the globe.
There is a lot that we need, but someone had to say it, so we are saying it here, even if financially it is impossible to have the best system everywhere or even anywhere. At least the model for the best system ought to exist, all providers ought to know what that model is, and every provider or stakeholder in the service of persons with brain injuries ought to be strive to provide the best model that they can to their entity's or jurisdiction's ability.
In conclusion we say that there must be actual survivor input into the affairs of our brain injury survivor community. There are many more issues than discussed in this section. Please read this web site (for example, our section on Public Policy) if you wish to know what we say our issues are.
Author: Susan C. Hultberg, Brain Injury Survivor (1985), President and Executive Director of the Brain Injury Network