On January 8, 2013, I was fortunate to meet Craig Sears, who is a “VOICE” for Traumatic Brain Injury Survivors. Craig’s passion and commitment to this cause are impossible to put into words. Craig plays an important role in the Sarah Jane Brain Foundation. To learn about this wonderful conference and The National Pediatric Acquired Brain Injury Plan (PABI Plan) read my last post.
Craig is a compelling voice for all brain injury survivors. He has dedicated his life to fighting for TBI survivors and advocating for their rights. He wants to make sure that no one goes through what he endured.
Craig suffered a TBI when he was thrown from his motorcycle when he was twenty years old.
To listen to Craig tell his story in his own words click below:
This is the story of Craig, as he wanted it to be published.
If you are wondering why the Sarah Jane Brain Foundation and friends are devoting day and night to help children and young adults who suffer from the #1 leading cause of death and disability, please take just 5 minutes out and read my story then share your thoughts with as many people as you can. By doing this, you will raise awareness of TBI and in turn someone else who experiences this could get the help and understanding they so deserve (Chances are someone you know has experienced something very similar).
During my lifetime, I have been confronted with challenges, obstacles, and disappointments. In the scope of this brief autobiography I will share some of these events and circumstances. The purpose of sharing my experiences with you is not to blame, shame or to point a finger in anyone’s direction. I have found that little benefit comes through such behavior. Living life on life’s terms, to me, means that I deny the notion that I am a victim of my circumstances.
Life After Traumatic Brain Injury • Craig’s story
People aren’t aware of brain injuries. No one thinks brain injuries will affect them or their children. A lot of brain injured people look perfectly normal. Imagine having a disability that caused you to slur your speech, made it difficult for you to learn new things, and affected your balance. Now imagine that no one knew you had this disability. That’s what it’s like for people living with a disability as the result of a brain injury. Brain injury is known as an invisible disability because there are often no outward physical signs of the disability. It’s not like falling and breaking a leg, where you see it and it heals. A brain injury can last a lifetime. There is no cure, only awareness and prevention. After that there’s only support.
For years, I felt as though no one else knew what I was going through, but believe me; Traumatic Brain injury (TBI) survivors almost ALWAYS experience the same things.
My name is Craig Sears and I am a survivor of a Traumatic Brain Injury. My journey has made me all too familiar with the difficulties faced by individuals and their families working through the arbitrary system of care. Suffering from a Traumatic Brain Injury is a life changing event. It’s like waking up a new person with limited abilities and a completely new life. After sustaining a Traumatic Brain Injury, I learned how easy it is for the State to take advantage of someone with a brain injury.
The injustices I have suffered led me to a life of advocacy. It has become my mission to ensure that no one else has to go through the experiences I have. I hope through my story you will become enlightened on the obstacles faced by Traumatic Brain Injury survivors and to my fellow survivors, “You Are Not Alone”.
Before My Accident
As a young boy, my sister and I grew up in a nice family oriented neighborhood in Fairfield Connecticut by Perry’s Mill Pond, with the added benefit of family living across the street. There were woods with ponds and dirt trails where we would all hang out and build forts, go fishing and swimming, as well as ride our mini bikes and go carts. In the winter months we would go to the next block over where we would all go ice skating and play hockey. It was great and was also my escape from all the drama at home.
My home life was not as serene as my life in the woods and on the trails. My father was an alcoholic and we barely ever saw him. When he wasn’t yelling, or passed out on the couch, he could usually be found at the bar drinking, throwing darts, and socializing with his bar buddies. There were times where we did go out as a family, but there were more times when he wasn’t there for us. When he did come home he would start fights with my mother; throwing things across the house and even breaking stuff. After he would throw his fit, he would go into the kitchen grab a glass of milk and pass out on the couch. He would sleep for a few hours, get up, take a shower, get dressed, leave the house, and head back to the bar and stay there until it closed. He would then come back home start another fight with my mother at around 2am, then go to sleep for a couple of hours before he had to go to work and do the whole routine all over again.
My mother worked very hard, she did everything she could to make sure my sister and I was taken care of. She worked two jobs to make sure there was food on the table. Our grandparents played a big role in our lives; my grandfather would help around the house because my father was no help and did not contribute. Whenever we needed something they were there for us. They lived close by, right on Long Island Sound; it was nice going over there.
My maternal grandfather was like a father figure to me. On the weekends he would take me out on his boat to go fishing, clamming, and even catch lobster. There were also times, where he and I would just grab the fishing poles and just go fishing and whatever we caught we would take it back to my grandmother and she would cook them as well as other foods. I can remember going over their house and going grocery shopping in their cellar. They had a separate storage room filled with food. There was always stuff that we could take home.
My father’s mother and my great grandmother were also very good to me. There were times during the week, as well as some weekends where I would get dropped off with my grandmother and it would be fun filled. We would play bingo at the local church and then go groceries shopping. She would bring me to get ice cream, and whenever the carnival was in town she would take me, it was great! I would get homed cooked meals, trips to the candy store and she’d let me stay up to watch all the late night shows. When I was 10 years old she passed away, it was very hard for me to process because I was very close to her. Then about a year later my parents got a divorce. This was a lot for me to handle, especially at such a young age. I see today how much this affected me; I no longer had my safe haven. I was forced to deal with the turmoil at home.
I even had a hard time when it came to school. I started having trouble early on; I always had trouble with my reading and my spelling. I couldn’t keep up with the rest of my class. I had gone in for testing and was diagnosed with a learning disability called dyslexia, and was transferred into special education classes. I would get picked up in front of the house by a small school bus, and my sister and some of the other kids around my neighborhood started making fun of me. I began to rebel and started skipping school. I would rather hang out in the woods on my mini bike then face the drama everywhere I went. When I did go to school I would hang out with the kids who just didn’t give a damn. I was always getting transferred in between public schools and co-ops. The time I spent in co-ops was like a “free for all”. They didn’t care what you did as long as you came to school. They would give you 20 points just for showing up. Everything was on a points system. If you went to class, they would give you points for doing the work. If we acted inappropriately, they would deduct points for screwing up. If you earned enough points they would give you a choice, either take you out for pizza, McDonalds. I can say it didn’t help me because I learned how to play the system quickly. I would not do the work but still managed to get the teachers to give me what I wanted. I wish I had teachers who forced me to do the work and pay attention; instead I got rewarded for doing nothing. This reinforced my bad behavior. I now realize how important school is and I wish the adults that were in charge of my education and I did things differently.
I did have a strong role model in my grandfather. My grandfather taught me at a young age, “If you want something you have to go out and earn it”. My mother found me a program through the town that allowed me to work and learn work ethics. But, I still did not listen to her and I eventually dropped out of school. The first time I dropped out of school, I was fourteen. Instead of going to school I hung out in the woods with all my friends. I then picked up more work doing landscaping and odd jobs around the neighbors houses. Then my cousin got me a job working for “Town Fair Tires”. I thought this was making me a man because I was making the money I needed to go out and get the things I wanted. I learned how to play the game quickly and needless to say, as I started getting older I started to become very defiant, I started drinking and hanging around parting with all my friends.
Watching my dad do it for so many years, I thought that’s what life was all about and I started going in between homes; (mother, father, family, and even friend’s houses) to try and find ways to come and go as I pleased. But no one would ever let me run wild and do what I wanted to do. So I grabbed my cat and some clothes and started sleeping in my car, but the police would always come and bother me. After a while I got bored of it and decided to go back home, where I knew I would be able to get away with a lot more because my mother was always working. When I was seventeen years old my mother had to sell the house and we ended up moving into a nice condo right on the water. It was a beautiful area. My friends came over a lot and we would hang out by the pool and down by the beach, we always had a good time.
It was around that time that my father finally stopped drinking and started putting his life back together. First he put himself into a detox program and then to a rehab facility. After completing rehab, he started attending AA meetings. He would bring me along and have me go to Al-Anon/Alateen meetings, where teens can attend meetings to get comfort, advice, and support in dealing with the difficult issues. But I was more worried about the girls, and what they were doing, then I was about listening to the instructor teaching the class. Maybe if I would have been listening, it would have saved me a lot of future mistakes.
By the time I was sixteen; I dropped out of school for good and went back to work. That’s when my father ended up getting me a job as an auto mechanic; I did that for a while. I started to get bored with working on cars, and that’s when my sister’s boyfriend offered me a job doing construction. So I went to work with him. I thought this would be a good trade to learn. I was starting to realize the affects of my actions. I wanted to mature and wished I had paid more attention to the lessons my family tried to teach me. But I still came and went as I pleased! I wanted to do better but I wasn’t ready to put in the work. It came to a point where my mother and I would argue all the time. I would yell and scream at her because I felt I could do whatever I wanted. There comes a time in everyone’s life where they wish they could go back in time and change the actions they made, and for me this is one of those times. I see today how much I disrespected my mother when all she was doing was trying to be the best parent she could be.
Needless to say, I started to hang out with the wrong crowd’s. People who were very well known and respected; I became popular very fast. My friends knew if they needed something they could come to me. No matter what it took, I always went the extra mile. I started buying cars, motorcycles, etc. (what I called toys). I dated a lot of girls and even though I had dropped out of school at the age of sixteen, by the time I was Seventeen I had been to 2 different proms. I had a lot of good times. With my popularity also came constant run ins with the Police. I thought I was invincible, like most kids my age do. The local Police Department knew my car on sight. If my car was seen coming down the road or just parked down at the beach, even though I was with other people, they would still pick me out of the crowd and they would immediately pull me over, arrest me, or give me a ticket for whatever they felt like.
A short while after that, I turned eighteen, I met a girl that I was very much attracted to, but at the time she was dating someone else. We would always run into each other, and I knew she was the one I wanted to be with. Then one day I ran into her at one of the spots I used to meet all my friends at. We started talking and she told me her boyfriend and her had broken up, so I immediately asked her out on a date. We started seeing each other on a regular basis. I stopped hanging around with the crowd I was always with and started to focus on my relationship with her. When I would go to her house to pick her up, her family would always welcome me with open arms and made me feel like I was part of the family. Her family would even take us out to dinner. I started staying home more; and her and I started getting very close. We would stay home, watch movies or go out to dinner. During the Holiday Season we would go to New York City and go on the horse and buggy ride through Central Park. I even remember going to the malls around us to look at all the Christmas decorations and to get ideas on what to buy each other for Christmas. We would even write letters to show our appreciation for one another. We always enjoyed each other’s company, and I started living what I called my American dream.
There were also days when we would go to the park and would see parents with their children fishing and swimming, just enjoying themselves. After dropping her off at night, I would go home and call her and we would sit on the phone for hours on end talking about kids and the future. It was like a whole other life for me, made me start to really think more about what I wanted out of my life. That’s where I started to fall in love! I really started to focus more and looking at life in a whole different way. I started respecting my mother a lot more, that’s when I started jogging with her and just being more of a son to her. In some way it scared the hell out of me because I didn’t know what this life was all about. This was a big milestone in my life, I began to mature, but in a heartbeat it was all gone.
I had just turned 20 and after a night out together, I went home to go to bed. The next morning was July 9, 1987, that morning started out like every other day would. I woke up at seven o’clock like I always did, and went to work. I finished up early and got on my motorcycle and went over to one of my friend’s houses to relax and hang out. One of my other friends drove by and stopped, said he had a race coming up that night and needed help tuning up his car. That’s how we started our night. And it only progressed from there! I got on my motorcycle and we went to the auto parts store to get the parts we needed to fix the car. That’s when my life as I knew it, changed forever!
The Accident and Life After
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 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 in Bridgeport Hospital. I spent the next 9 months locked in against my will, slowly regaining my memory. It was a locked ward and the doors only opened when someone came in or out. I started sneaking out when they would bring in breakfast, lunch or dinner trays. I would run to the back stairwell where the service elevators were, jump in go to the first floor and dart out the front or side door. I would get a couple hours of peace before I would get brought back by the police, because the hospital would always call them and tell them I had snuck out again. I was angry and I wanted out. I would sit by the phone for hours trying to figure out how to make a call out. I finally figured it out and 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 and 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, which 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 and I would hurt myself repeatedly. There were 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 and 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 Traumatic Brain Injury 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. For example in 1989, I was riding my bicycle and a Bridgeport police officer pulled me over. I explained to him that I suffer from a brain injury. He then asked, “Are you on medication?” when I said yes, he gave me a ticket for riding my bicycle while impaired and then sent me on my way.
While I was struggling daily to live with my brain injury, I ended up with several minor arrests for public urination and things of that nature. This resulted in me constantly be thrown into mental institutions. After being 4 point restrained and forcefully drugged multiple times and having other patients spitting, urinating, throwing feces at me, and watching them have full blown conversations with themselves, I realized that this type of life wasn’t for me. It was like a stay in “One Flew over the Cuckoo’s Nest.” It was cruel and unusual punishment, no one should be treated the way they treated us. My life turned into a constant tug of war. If it was not a mental institution it was a jail cell.
For example: in 1997, I was walking down the street and I had to use the bathroom. It was very early in the morning and nothing was open. I saw a wooded area by the train tracks. I was using the bathroom behind a tree. I was seen by a metro north police officer that was patrolling the area with his dog. When I spotted him I zipped up my pants and started walking away. When he saw me he let the dog loose. I was severely attacked and had to go to the hospital to be treated for my injuries. When I was released from the hospital I was placed in police custody and informed that I was under arrest for attempted attack on a peace officer because my leg moved when the police dog was attacking me. They accused me of trying to kick the dog. I knew this was crap because I was the one taken to the hospital, not the dog. But the following day I was brought to court. I never saw an attorney; they just continued my case and sent me to Bridgeport Correctional Center for two weeks. I returned to court, this went on for about three months and from there I was transferred to a mental institution for another three months, and then I was released on probation. It was like a revolving door, I can’t count how many times they did this to me.
With the help of my family, I moved into and out of different apartments. But the pieces of my mind and my life didn’t fit quite right. I was restless and depressed. I struggled to cope. I turned to what I saw so many others do on the streets: alcohol and drugs. I learned the wrong way to deal with my problems. I thought it would help me forget all that I suffered through. Everything I long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often. I ended up in shelters, local lockups, and numerous mental health facilities all over the state. I continued on my downward spiral 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 Traumatic Brain Injury, 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 an 8’x10′ cell twenty-four hours a day with a vicious inmate next to me. I was always so scared to come out of my 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.
For example, 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 (CO) 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 my cell. After every wreck they do a count and when the CO came by my 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 AD/SEG for 2 weeks. From there I was sent back to my cell and was put on CTQ for the next 30 days, and I lost all my property (everything) – CTQ is Confinement to Quarters 23 hours a day lockdown, were you can only come out of your cell for a shower, in reality it’s 15min. and ASU is Administrative Segregation Unit also known as AD/SEG or the hole. I guess the difference between the two is that if an inmate receives CTQ as a disciplinary action the inmate stays in his same house (cell) but it confined to that area. Where if he was doing AD/SEG time he is in a totally different housing unit; Things like this were always happening to me.
I was put in prison for Violation of probation. On July 9, 1998, it was early one summer morning. Due to lack of services for TBI sufferers, I was again homeless. I was walking down a road and I needed to pee and nothing was open. Due to my previous experience with the MTA dog, I was very leery to relieve myself outside. So when I saw a garage open I went inside and took care of business. As I turned around I saw a Fairfield Police Officer standing there. I asked him, “is there a problem officer?” The next thing I knew I felt a hand on the back of my neck and I was thrown to the ground. From there I was handcuffed and thrown in the back of a police car. The police officer got in the car and once he was driving, I asked again “What’s wrong, I was just taking a piss?”
The next day I was brought to court, from there to Bridgeport Correctional Center. I was housed and brought back and forth and the last day I was brought to court I was told by the Public Defender/”pretender” that I was going to the Connecticut Valley hospital to a brain injury unit but before this happened I needed to see a judge. Yes, they all knew I had a brain injury and how I needed help, but they chose not to. When I was brought upstairs to the courtroom it was closed off for a private hearing. Someone from the state office of Protection and Advocacy for Persons with Disabilities, a doctor and my mother were there waiting. We were all told I was going to the hospital into a TBI unit, but needed to see the judge first. Superior court judge Lubbie Harper Jr; Never heard anyone’s statement, he opened my file and closed it and said he was sentencing me to the department of Corrections because they have one of the best mental health systems in the state. Keep in mind this is not a mental illness it is an injury. I’m still on NO medication and I never saw any shrinks, in or out of jail and I’m NOT mentally ill and when I was put into prison I was put into general population. This time the court gave me 5 years V.O.P. for taking a piss.
During my incarcerations, I suffered many indignities and witnessed atrocities. I spent years locked up 23 1/2 hours a day. Only allowed out to shower and make a phone call. I was sent to the medical ward and stripped absolutely naked and left there for weeks at a time. I have witnessed murders and rapes. There were nights I would be yelling and screaming in my sleep. Only to be woken up by the CO and put back into a strip cell. Words cannot express the horror of it all. All during a five year prison sentence. Five years that I spent every minute enduring one indignity or another. I spent my prison sentence being transferred in between these facilities: BCC unsentenced for four months, to MacDougall-Walker Correctional Institution for about fifteen minutes, to Hartford Correctional Center for two weeks, to Garner Correctional Institution for a year and a half, to Osborn Correctional Institution for eight months, to Carl Robinson Correctional Institution for four months, back to Osborn CI for several months, only to finish my sentence at Garner Correctional Institution.
Sixteen months into my sentence my mother came to visit me and told me my grandfather passed away. I was crushed. Two weeks prior to him passing away he came to the prison to visit me, and it was the first time since I was a kid that my grandfather put his arms around me and gave me a hug and told me he loved me. When I was taken to his wake, I was handcuffed, shackled and brought to the wake at 7am before anyone could get there. I was left with only two minutes to pay my respects and say my goodbyes. Two minutes to say goodbye to a man who was like a father and someone whom I love dearly and respected dearly. This one of the most painful days of my life; It’s bad enough that 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. Traumatic Brain Injury or not, I served every measure of that sentence to the fullest. It was hell! If it wasn’t for my mother who came to see me every week, I don’t know what I would have done. She helped me to stay strong and she would always tell me “never give up.”
“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.”
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. 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! After everything that I have been through, with the love and support that I have received from my mother who came to see me every single week, along with my sister, father, niece and nephew and my grandparents, I don’t know what I would have done. My mother and the rest of my family never gave up on me; it was the only thing that kept me going through all those years. I will never forget the love and support from both my mother and father on my release date. I had not seen my mother and father together since I was 10 years old. When they opened the door and let me out, my first sight was of my mother and father waiting to take me to a program that I had been waiting for, for so many years. Thank god my mother working along with Goodwill Industries of WCT was able to get me into a program after 16 years of being thrown into this deplorable life of hell!
Going through the program, Goodwill really opened the door for me. In 2008, Goodwill Industries awarded me for Achiever of the Year for outstanding individual accomplishment and vocational progress. I was recognized for my work in developing a Traumatic Brain Injury / Acquired Brain Injury (TBI/ABI) social group at Goodwill Industries. The goal of the group, the first of its kind in southern Connecticut, is to provide adults with TBI/ABI an opportunity to meet and socialize in a safe and healthy environment. I am proud to say this program is up and running to this very day. 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 Traumatic Brain Injury. And I was accepted into a HUD subsidized housing unit.
Being awarded by Goodwill meant a lot to me but having my mother & grandmother as well as my father there meant just as much. It was around the time that they were doing all radio, TV, workbooks, banners and posters on my efforts to putting a voice to Traumatic Brain Injury. It was also around the same time that I had joined The Connecticut Traumatic Brain Injury Advisory Board, and I was on the board with the State of Connecticut’s Health Service Program Director for the Department of Corrections, who I invited to the award ceremony. Have you ever heard the phrase “Don’t judge a book by its cover? Call it getting a big head, but it was almost like I was saying “Hey look at me, with support, hard work and a voice anything is possible for change”.
Life though continues to be a struggle. 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. So I try my best to help those with Traumatic Brain Injury get the help we need.
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.)
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 request 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, Jim 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!
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. 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, or even try to get one over on me! 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.
I have since become a National Advocate for Traumatic Brain Injury survivors. I’ve been in meetings with congressional leaders, speaking firsthand with people that can affect change. I consider myself to be a very fortunate brain injury survivor and to be a “VOICE” for those forgotten children and families.
2008 – Present. I found my voice for TBI. In January, I was approached by the Sarah Jane Brain Project. The Brain Project heard about me and my story, and they have since used that as part of a nationwide campaign to show an example of what can happen when brain injury goes untreated. It’s been an honor and a privilege to be a part of their historic and ground-breaking work. Everywhere I go in my travels, I meet new people. And my story seems to resonate with all who hear it. My advocacy started as a means to overcome my own difficulties. Now, it’s become my mission to make sure that no one else has to go through what I have.
The Sarah Jane Brain Foundation is one of the leading organizations in the country dealing with pediatric acquired brain injury (PABI), and its Advisory Board is comprised of over 200 leading experts from just about every major medical institution (from MD Anderson and Johns Hopkins to Mayo Clinic and Mount Sinai) and research university (from Harvard and Yale to UCLA and UNC) in the country. This Advisory Board created the National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of PABI families across the country. It’s an honor and privilege to be a part of their historic and ground breaking work. I appeared regularly on a talk show on Citizens Television, Inc. With the U.S. Department of Veterans Affairs New Haven Vet Center Readjustment Counseling Svc. Title of Show. “The Sandbox Chronicles,” getting the word out to our OEF/OIF Veterans, I was also asked by the State of Connecticut’s Health Service Program Director for the Department of Corrections to assist with the re-entering for inmates with Traumatic Brain Injury as a peer support mentor. I can easily relate and help these inmates because I have been there; done that in the same system and process they are going through. I will be informing the inmates about what is available for after care re-entering into society. Cable News 12 did an editorial on brain injuries, featuring me. Cablevision editorials featured me as their Hometown Hero segment on my efforts to putting a voice to traumatic brain injury in hopes that it will help present and future people dealing with the challenges and changes of Traumatic Brain Injury. In recognition of my years of Traumatic Brain Injury advocacy efforts; Sarah Jane Brain Foundation has named me to the Family Committee of its National Advisory Board. “I was told by a lot of good people that I was kept around for a reason. Maybe this is it.” The lives of all the Family Committee members have been directly touched by Pediatric Acquired Brain Injuries (PABI). They are either PABI survivors like me, or parents of children injured or killed by a brain injury. Their combined experiences are helping to shape the Projects message, goals and policies.
2009. I’ve also taken part in their nationwide PABI Hero’s Tour. In Boston, MA, New York, NY, District of Columbia, DC, Raleigh, NC, Helena, MT, Madison, WI, Lincoln, NE, Atlanta, GA, Miami, FL, Birmingham, AL, Pittsburgh, PA, Columbus, OH, Chicago, IL, Dallas TX, Denver, CO, Tempe, AZ, Los Angeles, CA, Seattle, WA “This was a blessing to me, it gives meaning to my many years of struggle”. The purpose of the tour was to raise awareness and create philanthropy for local PABI families across the country. Each host institution listed in the tour schedule conducted a two-hour panel discussion surrounding one of the seven Categories of Care as outlined in the National PABI Plan. I also got to present my personal experience/story at the National Institute on Disability and Rehabilitation Research in DC. While speaking with several US Congressmen’s about my experience, and in hope to make a difference, I’ve even gotten to present my story at the US Capitol for the announcement of the PABI List of State Lead Centers.
2010. Part of the “Voice for My Child” team, every 40 seconds an American child or young adult enters an emergency department suffering from a brain injury; the leading experts in our nation dealing with brain injuries have come up with a broad-based, bi-partisan plan to prevent, identify and treat our American youth with over 110 Members of Congress already endorsing it; however Democratic Congressman Frank Pallone from New Jersey and a few of his colleagues on the Energy and Commerce Committee refuse to even allow an up-or-down vote. Does Congressman Frank Pallone really not care about families who have a child or young adult suffering from a brain injury or is he so arrogant he thinks he knows better than the leading experts? I appeared regularly in Washington DC on Capitol Hill with Patrick and Sarah Jane Donohue giving my testimony on living with a Traumatic Brain injury. Etc
2011. I am pleased to report that Congressman Leonard Lance (NJ-6) announced federal legislation to implement the H.R. 2600: National Pediatric Acquired Brain Injury Plan Act of 2011 at Overlook Medical Center on Thursday, June 30, 2011. Joining Congressman Leonard Lance Patrick Donohue and his six-year-old daughter Sarah Jane the namesake of the Sarah Jane Brain Foundation, along with Traumatic Brain Injury Survivor Craig Sears and other families’ advocates and professionals then again on Wednesday, July 20, 2011, H.R. 2600: National Pediatric Acquired Brain Injury Plan Act of 2011 Room HVC 214 in the Capitol Visitor Center, East Capitol Street NE, Washington, DC 20515.
2012 – Providence, R.I. – Governor Lincoln Chafee and Congressmen James Langevin (RI-2) and David Cicilline (RI-1) will recognize Brain Injury Awareness Month at the State Capitol on Wednesday, March 14, 2012, by welcoming Sarah Jane Donohue, Craig Sears and other brain injury survivors and advocates. The event will highlight Representatives Langevin and Cicilline’s co-sponsorship of HR 2600, the National Pediatric Acquired Brain Injury Plan Act (PABI Plan Act). The $2.9 Billion, seven-year federal initiative is the largest in the nation’s history to prevent, identify and treat the #1 leading cause of death and disability for American youth: brain injury. In addition, Governor Chafee will be highlighting the more than $32 million the legislation will bring back to Rhode Island, Hasbro Children’s Hospital’s lead role, and Rhode Island’s leadership in treating brain injury and other brain-based disorders. Sarah Jane’s father, Patrick Donohue, will discuss how the experiences of his daughter inspired him to start the Sarah Jane Brain Foundation (SJBF), establish partnerships with brain injury facilities nationwide and work with Congressmen Langevin and Cicilline to introduce the groundbreaking legislation being discussed at the event. WHO: Governor Lincoln Chafee Congressman James Langevin (RI-2) Congressman David Cicilline (RI-1) Sarah Jane Donohue – six-year-old namesake of the Sarah Jane Brain Foundation Patrick B. Donohue, Esq. – father, Sarah Jane Donohue and founder, The Sarah Jane Brain Foundation Dr. Carole Jenny – SJBF State Lead Director, Department of Pediatrics, Hasbro Children’s Hospital Dr. Victor Pedro – SJBF Advisory Board Member, Founder, Rhode Island Integrative Medicine WHAT: Press Conference highlighting Brain Injury Awareness Month WHY: Pediatric Acquired Brain Injury (PABI) is the #1 leading cause of death and disability for American Youth (over 765,000 new brain injuries annually, over 80,000 hospitalizations and over 11,000 deaths). HR 2600 will fund over $32 million to Rhode Island to develop a seamless, standardized, evidence-based system of care for all families that have a child or young adult suffering from a brain injury. Hasbro Children’s Hospital is the SJBF State Lead Center for Rhode Island. Local neurorehabilitation expert, Dr. Victor Pedro, has pioneered an evidence-based, unique treatment therapy called Cortical Integrative Therapy which is changing the way brain injuries and other brain-based disorders are treated. WHEN: Wednesday, March 14, 2012 at 11:00 a.m. WHERE: State Room – Governor’s Office 222 State House Providence, RI Collapse this post
2012 – I appeared with Patrick and Sarah Jane Donohue the six year old name sake of the Sarah Jane Brain Foundation in Washington, DC. A Review of Efforts to Prevent and Treat Traumatic Brain Injury; The Subcommittee on Health hearing on Monday, March 19, 2012, at 3:00 pm in room 2123 of the Rayburn House Office Building entitled “A Review of Efforts to Prevent and Treat Traumatic Brain Injury.”
2012. SARAH JANE and FRIENDS GO TO CITY HALL TO THANK NY CONGRESSIONAL DELEGATION Bi-Partisan Support of HR 2600 Recognized During Shaken Baby Syndrome Awareness Week/Child Abuse Awareness Month; New York, N.Y. – Sarah Jane Donohue, the namesake of The Sarah Jane Brain Foundation, and other families impacted by Shaken Baby Syndrome and other brain injuries was joined by Congressmen Michael Grimm (NY-13) and Bob Turner (NY-9) to thank them as well as the other Members of the New York Congressional delegation who have co-sponsored HR 2600 at a press conference at City Hall in New York City on Friday, April 20th at 11:00 a.m. The event was held during April since it is Child Abuse Awareness Month as well as Shaken Baby Syndrome Awareness Week. The event highlighted the bi-partisan support by Representatives Grimm, Hayworth, Israel, King, Maloney, Rangel, Reed, Tonko, Towns and Turner of HR 2600, the National Pediatric Acquired Brain Injury Plan Act (PABI Plan Act). The $2.9 Billion, seven-year federal initiative is the largest in the nation’s history to prevent, identify and treat the #1 leading cause of death and disability for American youth: Brain injury!
The Sarah Jane Brain Foundation (SJBF) is an advocacy organization in the field of Pediatric Acquired Brain Injury. The foundation was founded in New York City in 2007 by Patrick Donohue, whose daughter 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. The mission of the Sarah Jane Brain Foundation is advance knowledge of the brain and to change the world for Sarah Jane and the millions worldwide who suffer from the #1 leading cause of death and disability for youth, brain injury. One of its primary goals is to fully fund and implement the National Pediatric Acquired Brain Injury Plan (PABI Plan), which creates a seamless, standardized, evidence-based system of care that is universally accessible for all children and young adults with a pediatric acquired brain injury regardless of where they live in the United States.
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 from reading my story 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.
It’s been over 20 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 from a nightmare 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. 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. But we are supposed to put our trust into them. How can you put your trust into a system that would rather lock you up and throw away the key then help the people who actually need it?
Example; 2012 I went back to the same town I grew up in and the same Fairfield Connecticut cops that harassed me because of my disability were still there. I returned to the Fairfield Police Department to pick up my records, and ran into one of my arresting officers. Maybe before they promote people to important jobs like Chief of Police, they should make them take a course in how to handle all situations such as disabilities as Traumatic Brain Injury. Talk about being clueless! Gary MacNamara, who is now the Chief of Police, who mind you, knows I have a brain injury, can make a stupid remark like this; “Are you still the same Craig who acts out?”
Signs and symptoms of neurological impairment caused by Traumatic Brain Injury depend on which structures in the brain are damaged. • Anxiety, nervousness • Behavioral changes • Difficulty controlling urges (disinhibition) • Impulsiveness • Inappropriate laughter • Irritability • Blurry or double vision (diplopia) • Depression • Difficulty concentrating or thinking • Difficulty finding words or understanding the speech of others (aphasia) • Difficulty swallowing (dysphagia) • Dizziness • Headache • Incoordination of movements • Lightheadedness • Loss of balance; difficulty walking or sitting • Loss of memory • Muscle stiffness and/or spasms • Seizures • Sleep difficulties (more or less sleep than pre-injury) • Slurred and/or slowed speech • Tingling, numbness, pain, or other sensations • Sense of spinning (vertigo) Weakness in one or more limbs, facial muscles, or on an entire side of the body
“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.”
The one and only way that a change is possible is if enough people have become fed up. But if people don’t come forward it will continue. The only way we can grow by letting people know we exist and we are fighting for everyone. Day after day I get emails about the horrible things that the US States are doing to brain injury survivors. They need to be stopped; we have rights for a reason, but the State’s trample all over them as if they are immune to our constitutional rights. We plan on doing everything we can so we can all help each other. And with enough people complaining about the wrong, we can bring this information to the media as well as the United States. Lets finally put a stop to this, all it takes is spreading the word so let’s stick together and start fighting back with the rights we are given. We all look at life differently; we all have a different out put on things. You might look at someone different then someone else would. But we are one; we are what god made us out to be. It’s our turn to grow as a person and help the others around us. A single voice is often unheard but a thousand voices can shake the world. If we come together we can make a difference.
My mother for always being there for me accepting me for who I am and always telling me, “never give up, this too shall pass.” My father for introducing me to the 12 step program and showing me it can be done, because I have been sober for many years. I’m happy to say that my father has been clean and sober for many years as well. He made a complete 180 in his life and became the man that I’m proud to call my dad. My sister for always being there for her kids the way our mother is for us. My grandparents for always being there for us! Everyone that has helped me over the years, an act of kindness is long remembered. Thank you
What I Value:
Faith, family, true friends, education, honesty, love, happy memories, good health, falling and then getting back up as a stronger person, not taking the small things for granite, finding inner peace and balance, and always remembering who helped me get to where I am now.
What I Leave Behind:
I hope my achievements in life shall be these; that I will have fought for what was right and fair, that I will risked for that which mattered, that I will have given help to those who were in need… that I will have left the earth a better place for what I’ve done and who I’ve been.