Advocacy by and for People with ABI (Acquired Brain Injury)
Medical Designations (Brain Injury Classifications)
We want designations that will most help our survivor community.
There is an effort in by the BIA USA to reclassify "brain injury" into a disease. Up until now, it has not been classified as a disease.
We at Brain Injury Network have written to Congress about this effort to reclassify (traumatic) brain injury as a disease. The main point is we at BIN have thought that the designation “Traumatic Brain Injury”, which has always referred to the causation aspect, should be maintained.We suggested adding the category “Post-TBI Syndrome” to reflect the new medical research about the long-term, chronic “disease” potentiality due to but after the TBI. Additionally, we sought and continue to seek that TBI be classified as a form of ABI here in the United States. And we recommended that Congress seek wide medical peer review prior to legislation of any designation changes.
However, upon further reflection, if reclassification of “brain injury” to a disease would mean that people with traumatic brain injuries are going to get services and benefits that have been withheld from them then we would be for it. We are aware of certain survivors being denied government Medicaid benefits on the pretext that they do not qualify as having had a “medical condition”, i.e. disease. (Apparently Medicaid sometimes denies benefits by stating that the person with the TBI merely has a “neurological impairment”, not a “medical condition”.) This type of determination also may reduce significantly the services reimbursed by insurance companies. We merely ask for an assurance that services and benefits will improve for persons disabled by TBI if this designation change is implemented.
There seem to be several TBI situations to reflect upon for the purposes of service delivery, funding, research, benefits, and insurance reimbursement. (1)There is the initial acute phase in which immediate medical sequela arise. This phase sometimes results in permanent impairments. (2) Secondary medical conditions arrive fairly quickly during and after the initial acute injury and can sometimes produce permanent impairments. (3) There is the subacute phase which requires recovery in a medical facility, but past the intense initial acute phase. (4) So, the initial acute and subacute phases of TBI can often result in long-term, even life-long chronic afflictions. (5) According to newer medical research, there are also the long-term chronic issues that sometimes don’t appear for years after the TBI. (Post-TBI Syndrome?) (6) A related topic that contains both medical and nonmedical aspects is life after TBI which may include “community reintegration services”; on-going physical, neuro-cognitive, occupationaland speech therapy or rehabilitation; adaptive equipment; assistive devices;medical maintenance; accommodations and additional supports in day-to-day living (examples: supports in the areas of employment, housing, paratransit, money-management, in-home services, etc.).
It was a mental leap for some of us at BIN to move the acute brain injury stage from injury classification to disease classification, (and it probably will be for some others as well) but if the doctors think that is how it should now be, and at least this Dr. Masel and the Brain Injury Association think so, then we will defer to the doctor’s opinion, if it will increase, not decrease, services and benefits for people tragically impaired because of TBI. We want the medical designations that will be most helpful to our survivor community.
Note: It came to our attention the week commencing 5-17-09 that the U.S. Congressional Brain Injury Task Force is not spearheading any medical reclassification system. According to a top aide of a key Congressman on the task force, the task force expects any reclassification system changes to come from the medical community, not the Congress.