H.R.2600: National Pediatric Acquired Brain Injury Plan Act of 2011

Dear Congressman/woman: August, 2011

My name is Craig Sears, and I am a Survivor of a Traumatic Brain Injury. I am writing on behalf of the Sarah Jane Brain Foundation to thank you for co-sponsoring HR 2600, also known as The National Pediatric Acquired Brain Injury Plan Act of 2011. I applaud you for being a co-sponsor of this critically important groundbreaking legislation. I am adding support to the goal of creating a national model care system for children suffering from all Pediatric Acquired Brain Injuries, helping to protect the children of tomorrow from ever having to experience the horror and heartache of traumatic brain injury. This legislation will also help the thousands of troops returning from Iraq and Afghanistan with the “signature wound” of these conflicts – TBI.

My advocacy started as means to overcome my own difficulties. It's become my mission to make sure that no one else has to go through what I have. This is my personal experience about what happens when brain injury goes untreated...

It was July 9th, 1987, and it was a beautiful summer afternoon. I was out driving my motorcycle. I had just turned 20 years old and I had a lot going for me. I was making a very good life for myself. I had a great family. I had a good job in construction and also as a part time mechanic. I was making good money for a kid my age. I had a great social life, lots of friends, and I was very popular. I had a great girlfriend. I had 2 cars, a motorcycle, and lived in a nice condo right on the water. I was living the American Dream. Life was great.

And in a heartbeat, it was all gone. Suddenly, 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 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 (TBI). 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. 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, slowly regaining my memory, and a growing sense that this type of life wasn't for me.

I was angry. I wanted out. I began calling out to anyone who would listen to me - Town officials, State Government, anyone who could get me out. 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 mental health issue.

Eventually, a sympathetic ear at the Connecticut Governor's office helped arrange a meeting between my family, my doctors, and a state representative. I told them all, I wanted out, I needed out. And it was clear to them that I was right. But where was I to go?

I had only one real option, and that was my family. Yet I didn't want to be a burden to my parents. I applied for Section 8 disability housing, and was put on a waiting list. I was turned down repeatedly.

So in the meantime, my family helped me get into my own one room efficiency apartment. While a big step up from the psychiatric ward, this, too, was far from ideal. I now found myself living alone, except for the roaches and rats, and vulnerable, in an area known for drug dealers and prostitutes.

I wandered those mean streets, trying to regain some kind of memory. I would watch other people to see what they were doing, how they were acting in order to regain anything that I knew how to do before the accident. All I could figure out at this time was that this was not who I was.

With time and my family’s help, things began to improve for me. My family got me a weight set, my father bought me a bicycle and I started volunteering at a local hospital. That gave me access to their physical therapy rooms. I'd learn what they were doing for rehabilitation and go back home at night to do the exercises on my own in order to regain my strength and abilities. But without any medical oversight, I'd over do it. I hurt myself repeatedly. Many times, my mother took me to the hospital because I hurt so bad that I couldn't walk or move.

Socially, things were awkward. One day after volunteering, I was leaving the hospital. I saw a woman fall to the floor. My instincts were to grab a wheelchair, put her in it and run her into the emergency room. I thought I was doing the right thing. But in reality, my actions upset the emergency room staff, and the next day, the hospital asked me not to return. I was crushed.

One of the lasting consequences of my TBI was that I would slur my words when I spoke. And my balance would be off when I walked. Instead of realizing that this is how I am, people just assumed that I was drinking or using drugs. No one would take me seriously.

It became harder and harder to find where I fit in. With the help of my family, I moved into and out of different apartments. But the pieces of mind and my life didn't fit quite right. I was restless, and depressed. I struggled to cope. I turned to what I had seen so many others do on the streets: alcohol and drugs. I had learned the wrong way to deal with my problems. I thought it would help me forget all that I had gone through.

Everything I had long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often, ending up in shelters, local lockups, and numerous mental health facilities all over the state. Why? Because there was no help for TBI survivors, I continued to spiral down, and soon I wound up homeless, and not long after that, in prison.

The police, the court, the judge and the law, didn't know, care or consider TBI, or the fact that I had one. And once behind bars, neither did the warden. I served 5 years for what other people would sleep off overnight in the local lockup, and then clear up with a brief court appearance. Instead, I ended up inside a level four, high security prison, surrounded by gang members, rapists, killers, and child molesters. I was locked in a 9'x12' cell twenty-four hours a day with a vicious inmate next to me.

While behind bars, I received absolutely no help for my disabilities. There was no early release, or time off for good behavior from my sentence. TBI or not, I served every measure of that sentence to the fullest. And I suffered regularly the indignities associated with such an environment that common decency prevents me from sharing here. It was hell.

Somehow, I survived to be released in 2003. And again I needed a place to call home. After 20 years of waiting and being turned down, I turned to a local Congressman's office for help. Within 2 months, they cut through the red tape, and I finally received recognition of my TBI. And I was accepted into a HUD Section 8 housing unit.

Life though continues to be a struggle. I have no friends. I have no money. I have few options, and fewer choices. I am very uncertain of my future. I still want the American Dream, but it feels further away than ever. I want to be hopeful, but I know all too well how quickly good can go bad in life. But I try my best to help those with TBI get the help they need, and to avoid the mistakes, and missteps I made.

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, August 29, 2009, the State of Connecticut wrongly took away those services, without reason or notice. Fortunately I am a strong advocate for myself and after many phone calls, including to my Congressman's office (Congressman Jim Himes), 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 states to discriminate against and take advantage of someone like me - it's like taking candy from a baby!

The National Pediatric Acquired Brain Injury Plan (PABI Plan) develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of families who have a child or young adult suffering the leading cause of death and disability for American youth: brain injury.

In the words of Congressman Leonard Lance, the initial sponsor of HR 2600, “When a child suffers a brain injury, every American family is confronted with difficult decisions in terms of care, research and support. Systems of care are different from state to state, random from school district to school district and vary from one doctor’s office to another. What is needed is a national clearing house of information and resources for children impacted by brain injuries and their families.”

Specifically, this legislation would create a national network of 52 State Lead Centers of Excellence, one for every state plus the District of Columbia and Puerto Rico, with the responsibility of implementing the PABI Plan based on their own state's unique demographics, geography, laws, infrastructure, financing and causes of brain injuries without duplicating current practices. The legislation will cover the entire continuum of care from prevention, treatment in acute medical facilities, reintegration back into the schools, communities and homes and then transitioning into an adult system of greater independent living.

The plan calls for each of these 52 State Lead Centers of Excellent to have case managers specially trained to assist children and young adults with brain injuries. If the National PABI Plan were 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.

The legislation will also focus on individuals with a Mild Traumatic brain injury (including concussions) which account for more than 80 percent of brain injuries each year, as well as rural communities which account for 25 percent of the population and have higher incidence rates of brain injuries. For example, the 52 State Lead Centers would help children suffering from sports related injuries by providing additional information, resources and care.

According to the Centers for Disease Control, more than 765,000 American youth aged 25 and younger enter an emergency department every year with a new traumatic brain injury. More than 80,000 are hospitalized and over 11,000 die annually. This Act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries.

This is why the goal and mission of the Sarah Jane Brain Foundation are so very important. For myself, I wish on that July afternoon over 20 years ago, that there was a National Pediatric Acquired Brain Injury Plan in place for me. I wish that the State, doctors, and nurses, and all the cops, judges, and people whoever had the power over me had a clue about Traumatic brain injury. 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 first hand what its like to have lost my independence. The day this is signed into law I call it Independence Day across the Nation for Brian injury survivors and their families. Thank you to everyone that has been involved in this history making moment for brain injury.

Sincerely,



Craig Sears,

A Voice for Traumatic Brain Injury



Sponsor: Rep Lance, Leonard [NJ-7] (introduced 7/20/2011)
Committees: House Energy and Commerce
Latest Major Action: 7/20/2011 Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.

Cosponsors
Rep Bachus, Spencer [AL-6] - 7/25/2011 Rep Baldwin, Tammy [WI-2] - 7/20/2011 Rep Barrow, John [GA-12] - 7/20/2011 Rep Berman, Howard L. [CA-28] - 7/27/2011 Rep Blackburn, Marsha [TN-7] - 7/20/2011 Rep Blumenauer, Earl [OR-3] - 7/20/2011 Rep Bonner, Jo [AL-1] - 7/20/2011 Rep Brady, Robert A. [PA-1] - 7/20/2011 Rep Brown, Corrine [FL-3] - 7/20/2011 Rep Burgess, Michael C. [TX-26] - 7/20/2011 Rep Burton, Dan [IN-5] - 7/20/2011 Rep Capito, Shelley Moore [WV-2] - 7/20/2011 Rep Carson, Andre [IN-7] - 7/20/2011 Rep Connolly, Gerald E. "Gerry" [VA-11] - 7/20/2011 Rep Crenshaw, Ander [FL-4] - 7/25/2011 Rep Davis, Danny K. [IL-7] - 7/25/2011 Rep Diaz-Balart, Mario [FL-21] - 7/27/2011 Rep Doyle, Michael F. [PA-14] - 7/20/2011 Rep Fincher, Stephen Lee [TN-8] –7/27/2011 Rep Frank, Barney [MA-4] - 7/20/2011 Rep Fudge, Marcia L. [OH-11] - 7/20/2011 Rep Gallegly, Elton [CA-24] - 7/20/2011 Rep Griffin, Tim [AR-2] - 7/27/2011 Rep Grijalva, Raul M. [AZ-7] - 7/20/2011 Rep Grimm, Michael G. [NY-13] - 7/20/2011 Rep Harper, Gregg [MS-3] - 7/20/2011 Rep Himes, James A. [CT-4] - 7/20/2011 Rep Israel, Steve [NY-2] - 7/25/2011Rep Jackson Lee, Sheila [TX-18] - 7/20/2011 Rep Jackson, Jesse L., Jr. [IL-2] -7/20/2011 Rep Johnson, Henry C. "Hank," Jr. [GA-4] - 7/27/2011 Rep Kildee, Dale E. [MI-5] - 7/20/2011 Rep King, Peter T. [NY-3] - 7/20/2011 Rep Kissell, Larry [NC-8] - 7/20/2011 Rep Langevin, James R. [RI-2] - 7/25/2011 Rep Larson, John B. [CT-1] - 7/20/2011 Rep Latta, Robert E. [OH-5] - 7/27/2011 Rep Lewis, John [GA-5] - 7/25/2011 Rep Maloney, Carolyn B. [NY-14] - 7/20/2011 Rep McGovern, James P. [MA-3] - 7/20/2011 Rep McKeon, Howard P. "Buck" [CA-25] - 7/20/2011 Rep McKinley, David B. [WV-1] - 7/20/2011 Rep McMorris Rodgers, Cathy [WA-5] - 7/20/2011 Rep Meehan, Patrick [PA-7] - 7/20/2011 Rep Michaud, Michael H. [ME-2] - 7/25/2011 Rep Miller, Brad [NC-13] - 7/20/2011 Rep Moran, James P. [VA-8] - 7/20/2011 Rep Norton, Eleanor Holmes [DC] - 7/20/2011 Rep Payne, Donald M. [NJ-10] - 7/20/2011 Rep Pence, Mike [IN-6] - 7/20/2011 Rep Rahall, Nick J., II [WV-3] - 7/27/2011 Rep Rangel, Charles B. [NY-15] - 7/20/2011 Rep Richardson, Laura [CA-37] - 7/20/2011 Rep Ross, Mike [AR-4] - 7/20/2011 Rep Runyan, Jon [NJ-3] - 7/20/2011 Rep Rush, Bobby L. [IL-1] - 7/20/2011 Rep Ryan, Tim [OH-17] - 7/20/2011 Rep Schiff, Adam B. [CA-29] - 7/20/2011 Rep Sessions, Pete [TX-32] - 7/20/2011 Rep Sires, Albio [NJ-13] - 7/20/2011 Rep Tiberi, Patrick J. [OH-12] - 7/20/2011 Rep Towns, Edolphus [NY-10] - 7/27/2011 Rep Yarmuth, John A. [KY-3] - 7/20/2011