The hosting of a National Pediatric Acquired Brain Injury Plan to prevent a future Newtown

The National Town Hall was hosted on June 5, with a birthday celebration for Sarah Jane who turned 8, at George Washington University in D.C. Our featured panelists were Dr. Jeremy Richman, who founded the Avielle Foundation Named after his 6-year-old daughter was killed in Newtown, along with other. The Honorable Denny Rehberg Co-Chairman, Mercury/Clark & Weinstock and Former United States Representative (R-MT): The Honorable Patrick Kennedy Co-Founder, One Mind For Research and Former United States Representative (D-RI): Tish Haldeman (Founder of the John Blair Haldeman Foundation named after her son who committed suicide due to brain injury); Craig Sears (Brain injury survivor); Dr. Gerard Gioia, Division Chief, Neuropsychology & Director, Concussions – Safe Concussion Outcome Recovery & Education Program (SCORE) Children’s National Medical Center; Dr. Roma Vasa (Assistant Professor, Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Director of Education and Training, Kennedy Krieger Institute); Dr. Peter Patrick (Pediatric Neuropsychologist, Emeritus Associate Professor of Clinical Pediatrics University of Virginia School of Medicine); Scott Thompson, M.S., M.Div., LMHC (Director, Veterans Mental Health Coalition of New York City & Associate Director, National Traumatic Brain Injury and Emotional Wellness Alliance Mental Health Association of New York City)

My contribution to help achieve and provide the information that is needed to help others.

My name is Craig Sears. I'm a survivor of a traumatic brain injury. This is my personal experience about what happens when brain injury goes untreated. I was making a very good life for myself. I had a great family and a good job in construction and as a part-time mechanic. I had a great girlfriend and lots of friends. I was living the American Dream. And in a heartbeat it was all gone.

It was a beautiful Connecticut summer afternoon and I was out riding my motorcycle. I had just turned 20. I came up over a hill, and there was a car going the wrong way. It was too late. I couldn't stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I was not wearing a helmet and I landed head first into a curb, just missing a telephone pole. I have no memory of the next 6 months. That period of time is a Black Hole in my life. I was in and out of a coma, undergoing multiple surgeries. The doctors operated on my head, and did what they could to patch up my body. This was the beginning of my physical recovery.

Though my body was healing, a bigger problem went untreated. And no one realized it. Insult was added to injury. This is where I fell through the cracks. Despite having my head in a cast, no one identified the true nature of my injury as being a Traumatic Brain injury. That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died. My struggles were constant, and I had to relearn everything. How to walk, how to talk, how to eat, how to use the bathroom; How to care for myself, and then there was the incessant pain, the physical pain of my body overcoming weakness and injury. Worse yet, there was the anguish of not knowing who I was.

Things went from bad to worse. Soon, the treatment center I was in transferred me to a mental health ward. I spent the next 9 months locked in against my will, while I knew I didn't need to be there, I did know that I needed help in other areas. But the help I needed wasn't available. This was not a Psychiatric issue.

In the years that followed there was little knowledge on TBI in the medical field and even less in the public. As a result, my physical injuries were confused with intoxication or drug abuse and my brain injury misdiagnosed as mental illness. I was falsely arrested and institutionalized time and time again. My life turned into a constant tug of war. If it was not a Psychiatric hospital it was a jail cell. I ended up with several minor arrests for public urination and things of that sort. The state of Connecticut did find a way to use my injury against me. It was a probation violation, for which I would ultimately receive a five-year prison term.

During my incarcerations; I suffered many indignities and witnessed atrocities. When I would go to the correctional officers and tell them that I feared for my life, they would send me to medical and put me in a mental health cell, where I would be stripped completely naked and left there for days. When I would knock on the door to get someone’s attention, I would get pepper-sprayed directly in the face then the CO’s would come in and 4-point restrain me on a metal cot, then a nurse would come into the room and forcefully drug me, when this was over, I would be sent back to my cell. I was always so scared to come out of that cell but at the same time, I was scared to be in it, because of all the other inmates and because you had no choice but to be in a 2 man cell. One day I started to realize that a lot of my things were going missing. When I realized my cellie was stealing from me, I let the Correctional Officer know during wreck what was going on and I asked for a cell change.

I can only imagine that the CO said something to him because after wreck, my cellie attacked me in our cell. After every wreck they do a count and when the CO came by the cell he saw us on the floor fighting. Next thing I knew there were CO's pulling us off one another and putting us in handcuffs and shackles and dragging us off to the Administrative Segregation Unit also known as AD/SEG or the hole; for 2 weeks. From there I was sent back to my cell and was put on Confinement to Quarters 23 hours a day lockdown, where you can only come out of your cell for a shower. They say you get an hour out of your cell but in reality its 15minutes. For the next 30 days it was like a revolving door, I can’t count how many times this happened to me. Words cannot express the horror of it all.

While I was in prison I learned that I was part of a class action lawsuit that resulted in the implementation of Connecticut’s ABI Medicaid Waiver implemented in 1999. Even though it was too late for me at the time because I was already incarcerated; they refused to help. This waiver allows the state to permit organizations to provide non-medical services to people with Traumatic Brain Injury enabling them to live in the community outside of nursing homes and institutions. I immediately requested that I be provided a program upon my release from prison!

As a brain injury survivor, I know firsthand how awful it is to have lost my independence.

My life today, I live and work a program 24/7, I have taken the advice to try and better myself and every time I have, the system has found a way to bring me down and leave me with no room to grow. I've been a participant in the Acquired Brain Injury Waiver Program for several years in CT and I have YET to find anyone that I don't need to tell what to do, or anyone that does not talk down to me like I'm a 2 year old, or even try to get one over on me. I believe that my rehabilitation has been curtailed as a result. I am frequently required to see a doctor or go into a state team meeting and prove that I am disabled. It's bad enough the state took and wasted 5 years of my life by putting me in prison, all because I am disabled and they did not want to help me. Instead of paying $100,000 a year on services for me, they rather waste $250,000 a year of tax payer’s money to have kept me in prison.

I can't help but to be concerned about what the state is going to do to me next, all because I have a Traumatic Brain Injury.

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 would be today.

The United States calls July 4th Independence Day, as a Brian injury survivor I know firsthand what it is like to have lost my independence, the day this PABI plain is signed into law I call it Independence Day across the Nation for Brian injury survivor's and their families.

The United States calls July 4th Independence Day, the day this PABI plain is signed into law I call it Independence Day across the Nation for Brian injury survivor's and their families.

WHAT IS MY FUTURE



Thank you so much for giving me this opportunity! I consider myself to be a very fortunate brain injury survivor and to be a voice for those forgotten children and families.

With as many times as I was imprisoned and institutionalized, I have met a lot of Brain Injury survivors whose family members as well as the United States, have forgotten about and have left it up to the system to take care of. It is obvious that the current system really does not work. Patrick Donohue's dedication to his daughter is beyond words. He is a true leader and role model for every single parent in the world. Working with Patrick is an honor and privilege as he is committed to helping others who need help.

My condolences to all those people who suffered the loss of their loved one(s) in the Sandy Hook Tragedy - We are with you supporting your mission. You’re such an Inspiration to us all, God bless!

Along with Former U.S. Rep. Patrick J. Kennedy who received the SJBF Lifetime Achievement Award back in April for his participation in this amazing cause. The Honorable Denny Rehberg Co-Chairman, Mercury/Clark & Weinstock and Former United States Representative (R-MT)

Craig Sears
National Advisory Board Family
The Sarah Jane Brain Foundation
651 West 169th Street, Suite 42
New York, New York 10032
212-576-1180

“Things work out best for those who make the best out of the way things work out!”
About The Sarah Jane Brain Foundation

The Sarah Jane Brain Foundation (SJBF) is an international non-profit named after seven-year-old Sarah Jane Donohue. Sarah Jane was violently shaken by her baby nurse when she was just five days old, breaking four ribs, both collarbones and causing a severe brain injury. Since the foundation was launched in October 2007, it has quickly grown into one of the largest organizations in the world dealing with the #1 leading cause of death and disability for American children and young adults up to 25 years of age: acquired brain injuries. Acquired brain injuries are caused either by trauma (i.e., motor vehicle crashes, child abuse/abusive head trauma/shaken baby syndrome, youth sports concussions, blast injury from war, falls, gunshot wounds) or non-trauma (i.e., strokes, brain tumors, meningitis, near-drowning). In the United States, over 765,000 American youth enter an Emergency Department with a new brain injury every year, over 80,000 are hospitalized and over 11,000 die. Basically, every 40 seconds another family enters an Emergency Department with their child suffering from a brain injury and these only represent the brain injuries that are actually identified (it is estimated two to three times as many go undiagnosed each year). As a reference point, there are about 24,000 new cases of autism and 56,000 new cases of HIV every year.

The SJBF International Advisory Board includes experts from just about every major medical institution (from MD Anderson and Mayo Clinic to Johns Hopkins and Children’s National Medical Center) and Research University (from Harvard and Yale to University of Virginia and Duke). A full list of the SJBF International Advisory Board is located on its website, www.TheBrainProject.org. Over 75 members of the Advisory Board met in January 2009, in New York City to draft the first-ever National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care that is universally accessible for all children and young adults suffering from a pediatric acquired brain injury (PABI) as well as their families.

On June 5, 2009, Sarah Jane’s fourth birthday, SJBF announced the largest healthcare collaboration in U.S. history dealing with PABI – one institution from every state plus the District of Columbia and Puerto Rico was selected as a SJBF State Lead Center of Excellence.

In August, 2009, SJBF converted the PABI Plan into a $930 million multi-department, multi-year grant proposal to begin funding and implementing the plan. In October 2009, SJBF had a concurrent resolution of Congress (H. Con. Res. 198) introduced which endorsed the PABI Plan as the plan to prevent, identify and treat PABI and it established a national political consensus with over 100 bi-partisan Members serving as a co-sponsor. In July 2011, SJBF had a bill introduced in Congress (H.R. 2600) to fund a $2.9 billion, seven-year, federal initiative to implement the PABI Plan. Over 145 bi-partisan Members of Congress agreed to co-sponsor this effort from conservatives like Reps. Ron Paul, Michelle Bachmann, Mike Pence and Michael Burgess to liberals like Reps. Barney Frank, Ed Markey, Raul Grijalva and Charlie Rangel. SJBF is currently working with The United States Senate to pass federal legislation to implement the PABI Plan.

SJBF has expanded its efforts internationally as it has begun developing PABI Plans for other countries. The goal is to establish and implement a PABI Plan for every country for every PABI family around the world.

For more information and to understand what/why SJBF is doing, please take a few minutes to read Patrick’s letter to Sarah Jane when she turned five: www.TheBrainProject.org/lettertosarahjane.php.