Helping those with brain injuries
Long-term housing and fitness programs offer promise
MASSACHUSETTS IS A WORLD LEADER in emergency, acute, and acute rehabilitation medical care. Our colleges and universities conduct advanced research on cognition and intelligence, and are home to some of the greatest thinkers in their fields. Our physicians, hospitals, and medical institutions are on the leading edge of disease research and treatment.
Yet until recently, the Commonwealth had never taken a data-intensive look at the many causes of injury to the brain, the most important and complex organ we have. That changed last March with release of an epidemiological report called “Acquired Brain Injury in Massachusetts.”
Developed for the state’s Brain Injury Commission, the report tapped the expertise of the Department of Public Health and Massachusetts Rehabilitation Commission to draw the most detailed portrait yet of the causes of brain injuries, the numbers of people affected, and treatment outcomes.
Many people don’t understand how broad the ABI population is. The leading cause of ABI remains traumatic injuries from automobile accidents, followed by falls and strokes. Injuries can also be caused by infectious diseases, metabolic problems, and tumors of the brain or central nervous system.
The causes of ABI, and how injuries express themselves in people’s function and lives, are as varied as humans. And those who have survived and are living with a severe brain injury often face the most challenging future.
The report goes on to say that a portion of individuals who have suffered an ABI are covered by public health insurance payers. The Commonwealth is addressing the need of these individuals through a number of programs created specifically for brain injury; however, the resources are not nearly enough to reach the much larger affected population.
The report points out that survivors of brain injury are sometimes released from the hospital to go home, often without access to the rehabilitation needed. Lack of access to post-acute rehabilitation can lead to a worsening of the condition, impacting the individual immediately and over time. Even for those discharged to nursing homes and other long-term rehabilitation hospitals, the specialized rehabilitation needs for this population are not being met.
It is estimated that thousands of individuals living with brain injury are in nursing homes or other settings without appropriate care. It is even harder to estimate how many are living in the community on their own without sufficient help.
Over the past 20 years, those in the brain injury field and those living with a brain injury have seen, and now have evidence, that many of the functions once thought lost forever due to brain injury can be regained. But it takes longer-term rehabilitation, and in some cases a lifetime of ongoing rehab for physical, cognitive, and social fitness.
There is a sad irony in brain injury. Advances in medical care now keep many people alive who, not long ago, would have died from their injury. This is great. However, many of those individuals will need life-long care and, unfortunately, we have not created a solution for that — yet. Not only is the person faced with the enormous challenge of life ahead; in most cases, the person also remembers the value of their life before. It hurts.
Fortunately, we do know that life after a severe brain injury can have meaning. Research and practice are proving that under the appropriate conditions, and with the right supports, many brain-injured individuals, even those with severe injuries, can improve.
Together, the epidemiology report and our advancing science are challenging policy makers to consider: What are our civic responsibilities to survivors of ABI? How should communities house, treat, and support those with ABI? How many tax dollars are needed, and how should they be spent? What models work? What metrics can best measure success?
At our Brain Injury Wellness Center we offer physical, cognitive, and social fitness programs, helping residents and other brain-injured individuals in the community maintain and often improve functionality, leading to greater engagement in life. The work we do, in combination with the findings of our Wellness Center Research Council, illustrate the reality that the brain can heal after injury. Unfortunately, individuals in our programs only represent a tiny percentage of the thousands across Massachusetts who are living with ABI.
We cannot claim the answer to this major public health problem, but we can point to promising avenues for treatment and research. How that information plays out politically, and how much it reshapes public policy, cannot yet be known.
This much is clear: As our collective understanding of ABI grows, so too does our appreciation for the neuroplasticity of the brain and its ability to recover from trauma of many kinds. That is why Supportive Living maintains a Research Council that includes faculty, clinicians, and researchers from leading area academic and medical institutions. These professionals seek to assess the effectiveness of long-term services and fitness programs. Their mission speaks directly to the recommendations contained in the Brain Injury Commission’s 2011 report, which stressed the importance of “development of long-term community-based support services for both adults and children living with acquired brain injury.”
That language holds the promise that Massachusetts can someday provide to survivors of brain injury the kind of care that makes possible something we all hope for — an independent and fulfilling lifestyle.
A revolution in thinking about brain injury is occurring. We must acknowledge the science, leverage our resources, collaborate with our peers, and fulfill the promise of true independence and dignity for individuals living with the devastating effects of brain injury.Peter J. Noonan is executive director of Supportive Living Inc., a nonprofit that provides housing and physical, cognitive, and social fitness programs to survivors of brain injury.