Don't Save Me, Then Leave Me: Families Must Pick Up Where The Hospital Stops

More and more people are surviving brain injury because of great advances in medicine and technology. Many war veterans, athletes, or members of the general public have, through terrible tragedy, personally discovered the paradoxical strength and fragility of the mysterious human brain. But soon after leaving the hospital, both TBI survivors and their families discover that there is a deficiency in transferring to suitable neuro-rehabilitation services.

Comprehensive and seamless neuro-rehabilitation services from the acute hospital and back to the community is the solution to enabling the survivor of a brain injury to regain function and to relearn the skills of life. Research has provided evidence that these services are highly effective in terms of the outcomes for the person and that they are a cost effective solution to the issues that arise for the person as a result of brain injury.

Unfortunately, there is an overwhelming lack of TBI rehabilitation programs that emphasize repetitive interventions of sufficient duration—which research has clearly shown is necessary for any recovery after TBI. There is also a severe lack of long-term treatment plans or protocols. Those living with TBI experience a range of lifelong impairments and can potentially change over time. Many TBI survivors are largely left to exist and live with the impact of brain injury, very debilitated in terms of being able to function. Depending on what part of the brain is injured, the person may have challenges in understanding, thinking, perceptions, planning, and managing emotional and behavioral responses, thus leaving to families to research and find appropriate resources for rehabilitation and recovery post-acute phase and ongoing. Even the few places that do offer comprehensive post-acute rehab services can be very costly—further limiting availability to many families who are already struggling financially.

There are about 3.5 million Americans disabled due to the myriad sequelae of TBI and who have a lifelong condition that should be redefined as chronic traumatic brain injury disease. Currently, TBI is considered an event or the final outcome. But if TBI could be identified as a chronic disease, the development of appropriate protocols would be established and the individual could be more appropriately managed. TBI patients, caregivers, and health care providers could then take steps to mitigate all the medical and rehabilitation issues that develop after TBI.

In 2004, my son suffered a severe traumatic brain injury as a result of a serious car accident. Over the 12 years since his accident, as his mother and advocate, I've had to master the intricacies of a poorly coordinated and ill-defined system of medical response, treatment, and rehabilitation related to TBI—all of this within an equally confusing mélange of governmental and insurance industry oversight, associated with the dispensation of rules governing the TBI community of practitioner, professional and support services available to TBI patients and their families. There is simply an inadequate understanding of TBI post-acute care rehabilitation leading to a medical system lacking suitable cognitive and physical rehabilitation services.

Myself, and countless families, experience endless derailments in securing information, help and treatment for the lifelong recovery and rehabilitation of a TBI survivor. I found myself studying all manner of current medical research in order to understand caring for the chronic stages of brain injury and then having to convince and advocate for my son with his health care practitioners.

It seems as though while medical understanding and skill are extremely articulate and responsive during the acute phase of TBI, there is a sharp drop-off in those knowledge, skills, and therefore the hands-on support and protocols required to move TBI survivors from acute care to chronic rehabilitative care. In support of the latter, families must often research for themselves the long-term cognitive, behavioral, and physical rehabilitative therapies that would improve the quality of life for brain-injured people.

What was threatening my son's ongoing recovery and ensuing quality of life was not only how TBI was defined but also how its definition shapes regulations that either promote or constrain the resources and therapies available to people diagnosed with TBI. Ultimately, the biggest treat to my son’s recovery was that there are inadequate evidence-based protocols or standards of care for practitioners to reference. Families must become strong advocates for care—investing time in both the research and the communications needed to push for the best care and most successful outcomes.
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