H.R. 2600: National Pediatric Acquired Brain Injury Plan

March 25, 2012

To Whom It May Concern.

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, and I am adding my support as a Traumatic Brain Injury advocate to their goal of creating a national model care system for children suffering from all Pediatric Acquired Brain Injuries (PABI). This program is sorely needed, and it will help thousands of children and their families overcome the difficulties following a Traumatic Brain Injury (TBI). It will also help raise awareness of TBI and help the thousands of other American adults who yearly suffer a TBI as result of accidents, falls, strokes, or by other means. And it will help protect the children of tomorrow from ever having to experience the horror and heartache of TBI. This coupled with the growing awareness that thousands of our troops returning from Iraq and Afghanistan too are suffering from TBI -- this injury is being called the signature wound of these conflicts. This is my Story:

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.

It was July 9th, 1987, and it was a beautiful Connecticut 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.

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 me 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 nine 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 mother 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. I continued to spiral down, and soon I wound up homeless, and not long after that, in prison.

I had several brushes with the law. While I struggled daily to live with my brain injury, 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. I spent five years locked up in a level-four high-security prison where I received absolutely no help for my disabilities. I was locked in an 8'x 10' cell twenty-four hours a day surrounded by gang members, rapists, killers, and child molesters. All for peeing in a garage, does that sound like justice to you?

The police, the court, the judge and the law, didn't know, care, or consider my TBI. And once behind bars, neither did the warden. I served five-years for what other people would sleep off overnight in the local lock-up, and then clear up with a brief court appearance. Again, there were no programs, no early release, or time off for good behavior. TBI or not, I served every measure of that sentence to the fullest. Common courtesy prevents me from sharing here. It was hell.

Somehow, I survived to be released in 2003. 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 Traumatic Brain Injury (TBI) get the help we need, and to avoid the mistakes, and missteps I made.

In the 1990's I became a member of Connecticut's class action lawsuit working along with the Connecticut Brain Injury Association advocating for Connecticut's Acquired Brain Injury/Traumatic Brain Injury (ABI/TBI) Medicaid Waiver, implemented in 1999. This waiver allows the state to permit organizations to provide non-medical services to people with TBI enabling them to live in the community outside of nursing homes and institutions.

While in prison, I learned that I was part of a class action lawsuit that resulted in the implementation of Connecticut’s ABI/TBI Medicaid Waiver Program. I immediately requested that I be provided a program upon my release from prison! Thank God My mother was able to get me into a program after 16 years of being thrown into this deplorable life of hell!

During and after the program, I needed to find a place to call home, after 18 years of waiting and being turned down; I turned to a local Congressman's office for help, Former Congressman Christopher Shays. Within 2 months, they cut through the red tape, and I finally received recognition of my TBI. And I was accepted into a HUD subsidized housing unit.

(Fact) - The US says we have rights; but the State's trample all over them as if they are immune to our constitutional rights.

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.

I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years. Prior to obtaining waiver services, and as a result of a lack of community-based supports, I was imprisoned and institutionalized. It is my goal to continue to strive for independence with appropriate supports, and to continue my advocacy efforts for other survivors. With these goals in mind my ABI Waiver Service plan was developed in a truly person-centered cooperative team approach. My specific needs and goals were addressed through the design of a unique employment support program, and structured services that address my needs.

(I'm damned if I do and I'm damned if I don't.) – From my Fair Hearing Statement

After an annual review, of my current ABI Waiver service plan was approved, dated to commence May of 2009, and was signed by two Department of Social Services (herein referred to as the Department) social workers, Carolyn Wright, my former social worker, and Victor Estay, my current social worker, and social work supervisor, Gary Vertula. I had recently issued to the Department a complaint about an approved ABI Waiver provider that was not meeting my needs. The provider and I agreed to part ways, leaving me without services. This service lapse should have been temporary; however, through time delays and a refusal to authorize both service provision and payment to an approved provider selected by me, the Department has essentially suspended all of my ABI Waiver services without a formal notice, and without cause. Despite having a current service plan that was approved by the Department, I have been without any services since August 29, 2009.

Sec. 17b-260a-1I, states that “Individuals who are eligible for ABI services shall be given free choice of all qualified providers of each service included in his or her plan of care.” When I exercised this right to choice, DSS refused to authorize service provision and payment to an alternate DSS/ Allied approved provider of my choice, resulting in a complete absence of services. Sec. 17b-260a-1J7 states that “it is the responsibility of the Department to pay for approved ABI waiver services delivered by qualified providers through its fiduciary agent on behalf of the individual.”

While the Department may argue that a review of my service plan is necessary, additional evaluations are requested, etc., it cannot hold my services in suspense while these decisions are made by my team. I had a current Department approved ABI Waiver service plan. The Department has a responsibility and an obligation to provide me with these services until such time as any changes are made to my plan. Sec. 17b-260a-1J2c Responsibilities of the Department: “The Department shall assign social work staff to execute the following ABI responsibilities: implement the approved service plan and coordinate services provided to the individual under the waiver.” Furthermore, the Department has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. This was done without an ABI Waiver team meeting. In addition, I was not present, nor was my advocate and neuropsychologist. Sec. 17b-260a-1G4: “the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Department social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.”

I requested the immediate re-instatement of my ABI Waiver plan, as written. By withholding both the authorization to provide services and payment, to an authorized provider, the Department has placed me at risk of re-institutionalization, has halted my means of financial self-support, has left me without the ability to meet my own basic needs, and has neglected to support me in the least restrictive environment.

Fortunately I am a strong advocate for myself and after many phone calls, including to my local Congressman's office, James Himes [D-CT4] 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 Traumatic Brain Injury in my shoes would likely not have had the ability to advocate for him or herself 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!

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 that 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, in prison or dead.

Going through the aftermath of my TBI, I teamed up with The Sarah Jane Brain Foundation to help promote the need for a National Pediatric Acquired Brain Injury PABI plan, a proposed system of care that would be universally accessible for all children, and their families, regardless of where they live in the nation.

I would like to say I consider myself to be a very fortunate brain injury survivor, and to be a "voice" for these forgotten children and families.

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, Congressman Lance's 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 legislation will also focus on individuals with a Mild Traumatic brain injury, which accounts for more than 80 percent of brain injuries each year, commonly referred to as concussions, 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.

Today more awareness has occurred, but there is still much to learn, much like no two brain injuries are alike. The learning impact between different students will also not be alike.

Some states place services for individuals with TBI under Developmental Disabilities or under Mental Health Services. TBI is separate and distinct from developmental and mental health diagnoses. Individuals with developmental disabilities and/or mental health issues may suffer a TBI. However, not all individuals with TBI have developmental or mental health issues. Finally, challenges and interventions implemented with survivors of TBI may be very different from those implemented with individuals with developmental disabilities, mental-health diagnoses and a dual-diagnosis of TBI and developmental disabilities and/or mental health issues. TBI is an injury “Injuries require care, care that we all need, care that this plan can provide!

Quick Facts about PABI:

1) PABI is the #1 leading cause of death and disability for American youth

2) PABI is caused by A) Trauma: traumatic brain injury (TBI), such as motor vehicle crashes, abusive head trauma/Shaken Baby Syndrome, sports-related concussions, falls, gunshot wounds, blast injury from war, etc. B) Non-trauma: strokes, brain tumors, meningitis, seizures, near-drowning, etc.

3) Over 765,000 American youth enter an Emergency Department annually with a new TBI

4) Over 80,000 American youth are hospitalized annually with a new TBI

5) Over 11,000 American youth die annually due to TBI

6) These numbers do not reflect the significantly greater number of TBI cases that are not identified nor the number of non-traumatic acquired brain injuries

7) Upwards of 80% of the youth in juvenile detention centers across America have some form of a brain injury

This Act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries.

Congressman Lance's bill would ensure families wouldn’t have to reinvent the wheel when their child is impacted with a brain injury

Being a survivor of a TBI my journey made me all-too familiar with the difficulties of individuals and families working through the arbitrary system of care.

It's been 24 years since my injury and there is not a day that goes by where I'm not haunted by my past experiences and wake up in a sweat, yelling and screaming. 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 TBI.

As a brain injury survivor, I know firsthand how awful it is to have lost my independence. 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 understand the advice people have given me and I have used it and have worked it all into my life on more than one occasion. Every time I put the tools in my "tool-box" (or should I say brain) in an attempt to better myself, the system has found a way of pulling me back down.

My back is against the wall!

Over time everyone in my family has moved out of Connecticut and they have asked me to go with them, I looked into it and was told that there is a 5 year waiting list for any ABI Services, and in order to get on the waiting list in that state that I needed to live there for 2 years before I got put on the list; been there, done that. Insanity is not doing the same thing over and over again expecting different results; insanity is doing the same thing over and over again knowing full well what the results will be.

It's bad enough trying to find anyone that knows anything about brain injury. I’ve been a participant in the Acquired Brain Injury (ABI) 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.

I have kept in this “box” where I’m very limited on what I can do. 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.

For years, I felt as though no one else knew what I was going through, but believe me; Traumatic Brain injury survivors almost ALWAYS experience the same things.

"HAVE A HEART - SAVE A BRAIN"

For myself, I wish on that July afternoon that there were a national PABI plan in place. I wish that the doctors, and nurses, and all the states, 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.

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.

It's been an honor and privilege to be a part of their historic and groundbreaking work.

I support H.R.2600: National Pediatric Acquired Brain Injury Plan Act.

Sincerely,

Craig Sears,

A Voice for Traumatic Brain Injury