My trip to Harrisburg was just what I had hoped for. Senator Dominic Pileggi (Senate Majority Leader) set aside one hour to meet me. In attendance were two members of his general counsel. Today was not about Democrats, Republicans or Pro/Con Obamacare. Today was discussing Traumatic Brain Injury. This injury hits home because it can happen to any of us, our children or family members. I was very impressed and truly appreciated Senator Pileggi’s sincere interest in this issue. I intertwined our personal story with national statistics, insurance struggles (private vs. Medicare/Medicaid) and the breath of stories that families have shared with me from across the country.
There are 1.7 million victims of TBI annually; 4,000+ daily ranging from mild (concussions) to the most severe global traumas (Corey’s diffused axonal injury). Currently, TBI’s are more prevalent than all the newly diagnosed cancers combined. There is $81 million dollars spent on research for TBI vs. $5.3 billion dollars spent on cancer annually.
The key point stressed at today’s meeting was Funding. Insurance companies as well as Medicare/Medicaid spend millions to save a TBI patient’s life and virtually no funding to give them the rehabilitation to regain their quality of life.
Treatment for TBI is complex and highly specialized. It requires PT/OT/ST/Cognitive and Behavioral therapies. TBI, however, is tossed into a neurological disorder bucket, often overlooked, yet is the #1 acquired injury across the nation.
Most in the medical world and the payers in the insurance world do not understand the complexities of this injury. Hospitalization and Rehab policy in insurance plans was designed for muscular skeletal and orthopedic rehabilitation. These standards were written 4 decades ago. They do not cover the needs nor have they been adapted to present day neurological disorders. The national average length of stay in an acute care facility is 19 days. The average post acute rehab coverage is 26 days. TBI is often treated like an orthopedic injury; hospitalized for 6 weeks then onto rehab for 2 weeks regardless of whether the injury is mild or severe. All are judged on the same standardized neurological exam. I used the analogy of asking an athlete and a paraplegic to compete, both running a mile.
TBI rehabilitation is a life long recovery process that requires a minimum of 15 hours a week utilizing each discipline. Lack of funding, licensure restrictions and benefit restrictions leaves the survivors and families without this critical long term care. The alternative is private pay which is obviously cost prohibitive for most of the TBI population, our family included.
In addition, there has to be funding for training and education within the TBI field. Physicians, skilled nursing, PT/OT/ST/Cognitive and Behavioral specialists are dwindling. This leaves survivors and families without the expertise required for proper treatment for this injury.
Survivors can Thrive given proper services. Bob Woodruff and Congresswoman Gabby Giffords received rehab services for 18+ months. They are perfect examples of how sufficient scope, timing and duration of acute care can yield maximum levels of function and reduce long term disability and suffering. Unfortunately, they are they exception not the norm. The average American and their family often can not advocate for themselves. They rely on law makers to advocate for them, voting into policy and changing legislation to cover what they hope to achieve.
Families need funding for length of stay at the acute care level (hospitalization), rehabilitation services (2 years minimum), home modifications, community and residential services, skilled nursing facilities and agencies that understand the needs of TBI patients just to mention a few.
Federal legislation needs to meet the funding required for TBI through Medicare and Medicaid. The rates must be readjusted for the costly rehab that’s required for this life long recovery. The licensure restrictions must be reassessed to provide the trained facilities that can provide services permission to participate with Medicare and Medicaid funding. In conclusion, there must be more training and education for professionals within the TBI field including all therapy fields.
Senator Pileggi thanked me for introducing him to the intricacies of this issue. His comment, “you put skin, bones and blood on this injury”. He encouraged me to continue advocating and working with the Brain Injury Association. He is going to send me a list of organizations, advocacy boards and coalitions for Brain Injury to broaden my networking circle. In addition, he would like to reach out to his colleagues to see if he can make additional introductions. His general council suggested that perhaps a public hearing would be in order to assist with the awareness and education for this important cause.
Corey if your story can help one other person, it needs to be shared. Your accomplishments are a testament of what “CAN BE” even when others say it can’t be done. Never give up and never give in. Your ring is your mantra…Nothing is impossible. My personal favorite is still the Palamara motto, “the difficult is easy, the impossible just takes a little longer”. Hmmm, that might have to be Lesson #2 for Harrisburg…on our way to DC of course! xoxo