Those with TBI need their voices heard.
My name is Craig Sears I am a survivor of Traumatic Brain Injury (TBI) from a motorcycle accident. Due to my injury I have memory problems, speech problems, balance issues and many other things. I am disabled because of this and receive services from the state which enable me to remain in the community instead of in a nursing home, in prison or on the streets.
However, the State of Connecticut wrongly took away those services, for no reason and without notice. Fortunately I am a strong advocate for myself and after many phone calls, including to my Congressman's office, I was able to have them reinstate my services – but not without cost to me as I went for so long without getting the services I needed. It also brought to my attention the sad state of the system as it currently exists - it is designed to take advantage of people with disabilities. Another person with a TBI in my shoes would likely not have had the ability to advocate for themselves as I did, and without services they would not have anybody else willing to do it on their behalf. This is a very disturbing situation and it shows how easy it is for state to take advantage of someone like me - it's like taking candy from a baby!
There is a national organization called the Sarah Jane Brain Foundation whose Advisory Board wrote a national plan (the National Pediatric Acquired Brain Injury Plan) which would help in situations such as mine. The plan calls for the development of 52 State Lead Centers of Excellence which would, among other things, have case managers specially trained to assist children and young adults with brain injuries. If the National PABI Plan was in place, that case manager would have stepped in during my crisis and been my advocate. These people would be trained to help those who cannot help themselves. Imagine what would have happened to someone else in my same shoes who did not know to contact the people that I contacted to get my services back! They would have not gotten them reinstated and would have ended up on the streets or in prison or dead, that's what.
that’s why the goal and mission of the Sarah Jane Brain Foundation are so very important. For myself, I wish that there was a national PABI plan in place. I wish that the states and doctors, and nurses, and all the cops, judges, and people whoever had the power over me had a clue about TBI. I wish that when I needed it, there were people to turn to, answers to the questions I didn't even know I had, and the resources in place for me. I wonder how different my life and my family's lives would be today.
Sincerely, Craig Sears, a voice for Traumatic Brain Injury
Posted by Craig Sears