An inspirational survivor’s story!

Craig Sears - A Voice for Traumatic Brain Injury

My passion and commitment to this cause are impossible to put into words. I play an important role in the Sarah Jane Brain Foundation.

I am a compelling voice for all brain injury survivors. I have dedicated my life to fighting for TBI survivors and advocating for their rights. I want to make sure that no one goes through what I endured.

I suffered a TBI when I was thrown from my motorcycle when I was twenty years old.
Patrick Donohue, Founder of the Sarah Jane Brain Foundation, with Sarah Jane and Craig Sears

To listen to my story in my own words click below:



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 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 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 effects 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 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. 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. 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 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 overdo 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: 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. 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 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 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 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. 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 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.)

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. 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.

My back is against the wall.

Over time everyone in my family has moved away 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 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.

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.

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, Sarah Jane, was violently shaken by her baby nurse when she was five days old, causing a severe brain injury. The mission of the Sarah Jane Brain Foundation is to advance knowledge of the brain, to prevent brain injury in childhood, and to care for those who suffer such injury. One of its primary goals is to fully fund and implement the National Pediatric Acquired Brain Injury Plan (PABI Plan), which seeks to create a system of care accessible to all children and young adults with a pediatric acquired brain injury in the United States.

Founding

Sarah Jane Donohue was five days old when she was shaken violently by her baby nurse, resulting in two broken collarbones, four broken ribs and a traumatic brain injury resulting in the loss of more than 60% of the rear cortex of her brain. Her nurse pleaded guilty to child abuse and was sentenced to 10 years in prison, and her story captured the national media, including NBC’s Today Show, CNN, Good Morning America, two New York Post articles, New York Daily News, and New York Times.

After Sarah Jane’s injury, her father, Patrick Donohue, began laying the groundwork for what would become the Sarah Jane Brain Foundation by creating a website and posting Sarah Jane’s updates online for family and friends about her progress. They received tens of thousands of messages and prayers for Sarah Jane from all over the world when the story became front page news.

With the goal of streamlining and standardizing the system of care for pediatric acquired brain injury in mind, Donohue not only posted his daughter’s records online, but soon moved on to Phase 2 of the Sarah Jane Brain Project: the establishment of a National Advisory Board of professional and family experts in the field of pediatric acquired brain injury.

More than 75 of the SFJF's initial National Advisory Board members met in New York from January 8–10, 2009 to draft the National Pediatric Acquired Brain Injury Plan (National PABI Plan) to develop a seamless, standardized, evidence-based system of care, accessible for every family in the United States affected by this injury. The plan recognizes the multiple needs of these patients and families by designating seven categories of care: 1) Prevention 2) Acute Care 3) Reintegration 4) Adult Transition 5) Mild TBI 6) Rural/Telehealth and 7) The Virtual Center of Excellence.

Apple "Baby Shaker" app

In April 2009 a controversial app for the iPhone called “Baby Shaker" was released, and the same day discovered by Jennipher Dickens, a mother of a child who had been shaken at 7 weeks old by his then 21-year-old biological father. The child's mother later became a full-time volunteer for the Sarah Jane Brain Foundation. The app worked by shaking the iPhone until a pair of thick red Xs appeared over each eye of a baby drawn in black and white. The app was added to and then pulled from Apple’s App Store after protests about the program's offensive nature. Marilyn Barr, founder of the National Center of Shaken Baby Syndrome and board member of the Sarah Jane Brain Foundation’s Advisory Board commented “Not only are they making fun of Shaken Baby Syndrome but they are actually encouraging it. This is absolutely terrible.” Patrick Donohue sent an email of strong complaint to Apple’s CEO Steve Jobs and several Vice Presidents. After initially offering no comment, Apple finally apologized and removed the app.

The Sarah Jane Brain Foundation joined forces with Prevent Child Abuse America, the National Center on Shaken Baby Syndrome and two of America’s leading doctors who are experts in the prevention of Abusive Head Trauma (Shaken Baby Syndrome) and announced a joint effort with Soma Creates, a developer of iPhone based toys, to create applications to prevent Shaken Baby Syndrome.

American PABI Heroes Tour

The American PABI Heroes Tour was a 12-city, 11,000 mile nationwide tour to raise awareness for Pediatric Acquired Brain Injury and promote local philanthropy through music. In most of the cities, a panel of experts about PABI were assembled to discuss the challenges for families and professionals and in most of the cities local musicians competed. One winner was chosen from each city to participate in the Grand Finale at Webster Hall in New York City. The tour was hosted by recording artist Kristy Kay, the voice of Barbie. At the Finale ZC Flawless a Drum Line from Chicago, IL was declared the winner of the 2009 American PABI Heroes Tour.

Introduction of HCR 198

On October 13, 2009, United States Representative G.K. Butterfield (NC-1), along with over 40 bi-partisan original co-sponsors, introduced H. Con. Res. 198 during the 111th Congress. In this resolution, Congress endorses the National Pediatric Acquired Brain Injury Plan (PABI Plan) as the best plan to prevent, identify and treat all acquired brain injuries from birth until 25 years of age and encourages federal, state and local governments to implement it. The non-binding Resolution eventually secured more than 110 co-sponsors from both parties and across the nation, creating a broad base of support for the National Pediatric Acquired Brain Injury Plan Act, which was introduced in July 2011.

Zackery Lystedt Brain Project

Zackery Lystedt is a former youth football player who, in 2006, spent 31 days in a coma following a brain injury sustained during a middle school football game. Lystedt, then 13, returned to the field after banging his helmet hard on the ground, and collapsed into his father’s arms following the game as a result of his injuries. Lystedt spent the next month in a coma, and was unable to speak for nine months, unable to move for thirteen months. Lystedt’s story inspired Washington state lawmakers to enact legislation in his name protecting student-athletes from repeated brain trauma.

SJBF founder, Patrick Donohue, testified at the U.S. House of Representatives Committee on the Judiciary hearing entitled “Head and Other Injuries in Youth, High School, College and Professional Football” on Monday, February 1, 2010, in Houston, Texas. He described the upcoming Super Bowl week announcement about the Zackery Lystedt Brain Project.

The Zackery Lystedt Brain Project was announced at the University of Miami Miller School of Medicine on February 3, 2010. The Zackery Lystedt Brain Project is a joint initiative between the American College of Sports Medicine and the Sarah Jane Brain Foundation which advocates for the passage of youth sports concussion legislation in all 50 states to protect student-athletes from concussions and other brain injuries during training, practice and competition. State bills are expected to be modeled after Washington’s “Zack Lystedt Law” which mandates the removal from play for any athlete suspected of a concussion during play, with medical clearance needed before an athlete is able to return to play, as well as provides education and treatment guidelines for coaches, athletic trainers, players and parents. To date, 49 states have passed such legislation

Sarah Jane's visit to the White House

Sarah Jane Donohue, her father, and other members of the SJBF International Advisory Board, discussed Sarah Jane's letter to President Barack Obama at an early-afternoon press conference on Monday, July 26, 2010. The letter was later hand-delivered to President Obama at the 20th Anniversary of the Americans with Disabilities Act celebration at a White House celebration held that evening. The letter proposed a White House Summit hosted by President Obama to begin implementing the National Pediatric Acquired Brain Injury Plan and asked the President for his support of H. Con. Res. 198.

National PABI Plan Tour

The Sarah Jane Brain Foundation launched the “2011 National Pediatric Brain Injury Plan Tour” during NHL All Star Weekend in North Carolina with a presentation about the PABI Plan at East Carolina University. This was the first of over 70 events in a six-month tour that covered over 30 states. The tour sponsored by Easton-Bell Sports, focused on two types of presentations. The first was a presentation for high school students which focused on sports concussions. The second type of presentation focused around the PABI Plan and was intended for people in the medical profession.

Introduction of PABI Plan Act (HR 2600)

On July 20, 2011, the National Pediatric Acquired Brain Injury Plan Act (National PABI Plan Act) was introduced to Congress as HR 2600 by Rep. Leonard Lance (R, NJ-7) with 50 original bi-partisan co-sponsors. The bill would provide $2.9 billion in federal funding across all 52 PABI Plan-designated State Lead Centers to implement the PABI Plan over the course of seven years. All funds would be drawn from the discretionary budget of the Department of Health and Human Services, thereby adding no additional monies to the national debt.

The legislation has more than 110 co-sponsors, including conservative members of Congress such as Rep. Mike Pence (R-IN) as well as the liberal members such as Rep. Tammy Baldwin, D-WI Additionally, more than 35 professional and advocacy organizations have endorsed and/or provided letters of support for the legislation including many national sports organizations. This was announced on March 1, 2012, during a press conference with Rep. Lance.

The legislation has also garnered editorial support from The South Bend Tribune, Ventura County (CA) Star, and The Spokesman-Review of Spokane, WA, as well as a published op-ed in the Milford (MA) Daily News and coverage by the Deseret News, Utah’s oldest daily newspaper.

The International Academy of Hope (iHOPE)

The International Academy of Hope – NYC (iHOPE-NYC) is a highly specialized brain injury school in New York City founded by Patrick Donohue in September 2013. It meets a significant and unmet need in our NYC community, while also serving as a world-class model of best practices and high tech solutions in the delivery of educational brain injury services. The school raises the bar for standards of care by promulgating best practices, supporting innovative treatments, and sharing knowledge through both on-site and remotely delivered training. After an initial period, the model will be replicated in other major metropolitan areas of the country and around the world. There is no established leader in the educational landscape for children and youth with brain injury, and the International Academy of Hope is poised to step into this void, offering leadership, sharing its expertise, and dramatically improving the outcomes for the many American youth and others worldwide affected by brain injury and other brain-based disorders.

The mission of iHOPE is to transform the manner in which educational services are delivered to students with brain injuries in this country and abroad and to be the worldwide leader in advancing evidence-based services to these students. The school’s vision is to create the best brain injury schools in the world. It will serve as the exemplar, pilot program and change agent for modeling best educational practices. iHOPE will be a core beneficiary of the research promulgated through the PABI Plan, and will spur the migration of promising research and treatment into evidence-based educational practices. It will also provide leadership beyond the boundaries of its doors through advanced tele-education and tele-training programming.

iHOPE’s program description consists of a variety of services to meet the needs of the children, which includes the Academic Curriculum, Occupational Therapy, Physical Therapy, Speech and Language Therapy, AAC Systems, Vision, and Conductive Education.

The school opens its doors at 7:30 a.m. every morning to allow students to arrive early and have their breakfast. The school is open until 5:00 p.m. every day to allow all of the related services to be provided in one location and based upon the time of the day that is most appropriate for the student. This also allows for the students to return home around the same time as many parents/caregivers are returning from work. This eliminates the need for parents/caregivers to find highly specialized babysitting for a couple of hours each day while coordinating any additional related services the student may need. Daily schedules are highly individualized based on the needs of each student in attendance at iHOPE-NYC, and according to their Individualized Education Plan (IEP); therefore, no student’s schedule looks alike.

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.

There is not a day that goes by where I’m not haunted by my past experiences and wake up from a nightmare, 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; I went back to the same town I grew up in and the same cops that harassed me because of my disability were still there. I returned to the 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.”

I enthusiastically support the initiatives of the National Acquired Brain Injury Project These initiatives not only heighten awareness of brain injury but go beyond to engage consumers and experts to develop a practical, efficient, sustainable system for accessing resources and care. The brain injured population is underserved in general and often undiagnosed. Focusing on brain injury early in life can have profound effects on resource development and utilization in education, social service, mental health, court and correctional systems.

It is estimated that 25% of the adult correctional population has some degree of head injury resulting in a range of functional deficits. Many times these deficits are camouflaged by or co-occur with problems such as substance use, behavioral dysregulation or even mental illness. It is not uncommon for offenders to describe early histories of head trauma and problems such as learning disabilities, ADHD, Conduct Disorder and/or substance abuse. The causal links between head injury and the cognitive, emotional or behavioral sequalae are often mistakenly ignored. Over time the effects of early and consistent failures associated with the above further impact development through adolescence and beyond. Those with brain injuries affecting judgement, impulse control, the ability to learn from experience and management of anger are at risk to be incarcerated.

The cost of identification and early intervention can be high but the costs to do nothing is much higher. The National Acquired Brain Injury Project is bringing attention to an issue that is long overdue.

For myself I wish that there was a national pediatric acquired brain injury plan in place. I wish that the state and 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 and my family's lives would be today.

END BIO

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. Let’s 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.

Heroes:

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.

back in the day

Re: Life After Traumatic Brain Injury · Craig’s story

I used to dream about the future...Now I mostly just dream about what my life used to be?

My name is Craig Sears I am a survivor of Traumatic Brain Injury (TBI) I suffered my injury in 1987. In the years that followed there was little knowledge on TBI in the medical field and even less in the public. As a result, my physical injuries were confused with intoxication or drug abuse and my brain injury misdiagnosed as mental illness.

Today more awareness has occurred, but there is still much to learn.
My journey has made me all too familiar with the difficulties faced by individuals and their families working through the arbitrary system of care.

Why do people still believe that brain Injury is a mental illness?

¯\_ (ツ) _/¯ that is a question I've been asking for years. There have been many studies shown that brain injuries are NOT a mental illness. Well, then why do the states still continue to put it under that category? Don’t get me wrong I have nothing against Mental Health Services for mental health treatment.

Universal Services do not work with all brain injury survivors.

Traumatic Brain Injury (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.

So how can I prove that brain injury is not mental illness but a TBI

Unfortunately there is no way to answer that question I’ve been fighting four years to be recognized as a brain injury survivor and not Mental-health Below is just one example of one of the things I had to do. Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized. • The state department of mental health was being sued by 25 brain injury victims who were placed in psychiatric hospitals because there was nowhere else to put them and no services or programs for them. I was a member of that class action, class suit, ABI Waiver one was the first Medicaid-funded program in Connecticut that allowed individuals with brain injuries to live in the community instead of institutions, and it did so while reducing state expenditures by providing services at an average of 75% of the cost of alternative institutional care and received approximately 50% reimbursement from the Federal government. This truly remarkable Program not only made an incredible difference in the lives of many families and survivors but has saved the State money.
reference: http://www.clearinghouse.net/detail.php?id=439&search

Is this still going on can I get involved?

NO the US says we have rights; but the State's trample all over them as if they are immune…. ABI waiver 1, should have been a role model for the rest of the country instead… the help that we were able to receive from that lawsuit came to an end Governor Dannel Patrick Malloy, & Roderick L. Bremby Commissioner Department of Social Services put brain injury back in the mental Health System and justifying it by calling it ABI waiver II

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 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 (witch hunt) and prove that I am disabled.

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 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.

The United States has a best practice study on a one wing fly but none on the number one leading cause of disability among children and young adults (brain injury)

Every 13 seconds someone sustains a brain injury, 1.9 million in the US alone. I ask you to reconnect, reach out. Whether you realize it or not, this is just as much about you as it is myself. I certainly pray, you never have an experience like this one but, statistically speaking… This will profoundly affect YOU in this lifetime. I am asking to talk about making an impact, a life altering impact for the positive. I’m talking about making a distinct, powerful, caring change for many. Stand up and be counted, make a difference if not for the other's around you, for your family, your loved ones. A plan that is 100% for you, your loved ones, your neighbor as well as mine.

I as well as many other Brain Injury survivors have been through so much that when we think we are ahead we are actually 10 steps backwards. Life is always a struggle for me it’s a constant tug of war and a constant set back.

Please Help

Having to relive it all over again

People tell me they do not recommend that I do anything about these situations because I was informed that it looks creepy, But this B.S. does not change the fact that my ABI waiver program was made for advocacy and I do it because I think of other brain injury survivors as part of my extended brain injury family and I will never regret that. If I can save one other person from being taken advantage of the way I was then it is so worth it! And if someone holds that against me they can go kick rocks because I will continue to talk about my experiences as a brain injury survivor in hopes to help someone else. The one and only way that a change is possible 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.

In this file are my ABI Dr’s notes along with Staff notes of just some of the things I’ve been through because of Jamie Arber, Patty Happy trying to justify getting out of providing me the services that I was entitled to. This happened to me several years ago and because of the false accusations made by Staff superiors at Employment Options LLC Jamie Arber now of Mindscape Industries, Patty Happy. It's still coming back to haunt (me/US) to this day take for example Stephanie’s file below my notes, let’s not forget DSS and all that B.S that they put me through, I had those put on file with Jessica @ P&A that brings us to the new agency workers. Once again being a voice as you know I am dead set against the new case managers working on the ABI waiver and I still am. On 9/7/16 I had my first team meeting with my new case worker, and it went better than I expected. I felt as if things finally were starting to make a little more sense and this new case worker was here to work on my side for once and not against me. Then a day or two went by and my doctor informed me that the new ABI Specialized Care Manager was someone who I worked with before, (with another company) and that she needed to be removed from my team because there could be issues in the future because of false accusations that happened years back. Because of my Brain Injury I was not aware that it was the same person until my doctor addressed it to me. But she was a great help then and now she seemed even more into my program and trying to find ways to help me and better my program to make it work for me…

I am a survivor of traumatic brain injury TBI 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 Acquired Brain Injury ABI Medicaid Waiver this waiver allows the state to permit organizations to provide non-medical services to people with ABI/TBI enabling them to live in the community outside of nursing homes and institutions. I'm posting online my experiences as a survivor of a Traumatic Brain Injury TBI. It is to show the way the United States is not dealing with brain injury and the human cost associated with this neglect and how easy it is for program providers to discriminate against, and taking advantage of someone with a brain injury the way the State of Connecticut; Dept of Social Services, DSS, Employment Options LLC, did to me.

Employment Options LLC 91 Willenbrock Road, # 3a Oxford, CT is? I know what they say they are but I'm still not entirely sure what it is they actually do for brain injury survivors since I experienced no help whatsoever except for a lot of BS! EO has contracts and/or services Bureau of Rehabilitation services, the acquired brain wavier, DDS, and a variety of school system. Staff superiors at Employment Options LLC Jamie Arber, Patty Happy, Case manager Richard Kiley told me, Craig Sears; that EO had someone to work with me that was ILST approved turns out they were not! And when that person moved on, EO told me that they had someone else that was ILST approved, turns out they were not! Then when asked by my doctor about it, again EO stated that they had someone else that was ILST approved turns out they were also not! Do you see the pattern here?

After making formal complaints to my surprise EO finally sent me a person I can trust. At first everything was working for me the way I needed my program to work. I finally had a care giver by the name of Shannon that was a very motivating - dependable – carrying person who took the time to help me with whatever I need help with. In my life being a brain injury survivor, that’s a very rare person to find. When asked how my program was working for me this is what I told them.

During this time I just started advocating for a national children’s PABI plan.

That’s when the games began all over again! EO removed her from working with me and Sent Pre-Vocational Services staff who were instructed by EO management to refrain from providing me any services outlined in my State waiver plan! This made it appear as if they were providing me services when in fact they were not providing me any services to assist me in my work as an advocate!

I informed my Medicaid Waiver Doctor about the fact I was not receiving services outlined in my State waiver plan that Employment Options LLC reported providing me. When the doctor and the Office of Protection and Advocacy for Persons with Disabilities confronted EO about these facts, (Talk about ignorant, self-absorbed, Jamie Arber and Patty Happy) they then made unreasonable confrontational and defamation of character accusations regarding me working with female staff, and implied I had acted inappropriately. Reporting this to my Medicaid Waiver doctor and P&A as the reason why I was not receiving services.

I found this out at my Dept. of Social Services team meeting. I immediately asked my doctor to look into this B.S.

quote

Hi Craig

You are correct. Shannon denies every accusation made by Employment Options LLC. Wow!

Tariq Abdulaziz PhD MS MS MBA

RE: Shannon and Employment Options LLC

Attention: Craig Sears

I am writing to memorialize my conversation with Shannon on today. The purpose of my conversation with Shannon was to ascertain, as you requested, Shannon's position on her removal from your case by her superiors at Employment Options LLC 91Willenbrock Road Oxford CT 06478

I informed Shannon that both Jamie Arber and Patty Happy had conversations with me regarding her Shannon safety. Jamie Arber and Patty Happy indicated that she Shannon was uncomfortable working with you Craig. Jamie and Patty further related to me that Shannon had requested a change in placement, as she felt uncomfortable working with you. Jamie further stated that he would not place Shannon in a situation where she was uncomfortable and or vulnerable. Finally, he stated that Shannon had been hired for a different position and she was only a temporary solution until permanent staff could be hired.

Shannon vehemently denies that there was ever any behavioral and or sexually inappropriate behavior on your part in any way during her tenure with you. She did not hesitate or waiver when she stated that she never felt at-risk while working with you, she never requested a change in placement, there were no accusations leveled by her against you to her superiors, there were no incidents of inappropriate behavior on your part nor any attempt of an act of inappropriate behavior whether verbal or physical. Shannon stated that she enjoyed working with you and she values what you are attempting to achieve.

It is my hope that this addresses your concerns regarding Shannon's perspective on this matter. If I can be of further assistance regarding this matter please do not hesitate to contact me directly.

Respectfully,

Tariq Abdulaziz PhD MS MS MBA


If any of this has happened or is happening to you or someone you know please speak up, the one and only way that a change is possible 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.

Taken advantage of by Connecticut ABI Waiver program providers

click here: https://braininjurymyblog.wordpress.com/2014/08/16/what-comes-around-goes-around/

Employment Options - slander, false accusations, made by a Personal Care Aides/Medicaid Waiver Program provider

click here: https://employment-options.pissedconsumer.com/slander-false-accusations-made-by-a-personal-care-aides-medicaid-waiver-program-provider-20110416232636.html

Stephanie’s file

Click here: https://braininjurymyblog.wordpress.com/2016/09/17/stephanies-file/

If you’re disabled or a parent of a brain injury survivor or case manager/caregiver and Jamie Arber, M.A., C.B.I.S., C.C.H.Director of Operations EMDR Practitioner, Current Mindscape Industries, Previous Independent Living Solutions, Employment Options LLC, Eleish Van Breems Ltd or Patty happy of Employment Options LLC works or is working for you do what I did - Tell them to go kick rocks and fire them! These are not the kind of people you want working with brain injury survivors! Sec. 17b-260a-1I, 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.

This makes no sense it should have never happen. Shannon I’m sorry for what Employment Options LLC, Jamie Arber now of Mindscape Industries, Patty Happy did, and continues to do to brain injury survivors and Staff.

click here

RE: Centers for Medicare and Medicaid Services

Please see the information attached below. Please see the second page the next to last bullet. It reads as follows;

It is necessary for the new waiver case managers to meet with the clients and conservators privately – without the providers present.

The Person-Centered process as described by CMS is as follows; CMS requires that a person-centered planning process and assessment be used to develop a person-centered plan. The process is directed by the individual, with assistance as needed or desired from a representative of the individual's choosing. It is intended to identify the strengths, capacities, preferences, needs, and desired measurable outcomes of the individual. The process may include other persons, freely chosen by the individual, who are able to serve as important contributors to the process. The planning process must also include planning for contingencies such as when a needed service is not provided due to the worker being out sick. The contingency or "back-up" plan must become a part of the individual's person-centered plan. As part of the contingency planning process, an assessment of the risks to the individual must be completed and a discussion about how the risks will be addressed must be held.

The key portion is as follows;

The process may include other persons, freely chosen by the individual, who are able to serve as important contributors to the process.

Clearly there is a disconnect here!

Please see meeting minutes below

BIAC Providers Council Meeting
Location:
Brain Injury Alliance of CT
(1st floor in training room)
200 Day Hill Road, Windsor, CT 06095

Welcome & Introductions

Bonnie Meyers welcomed everyone and began the meeting with introductions. Guest Speaker: Barbara Nadeau, Ph.D., OTR/L, Assistant Clinical Professor ABI Waiver staff perceptions of their clients and the client’s perception of their staff: Results from a qualitative study

Barbara provided an overview of a qualitative study she conducted through interviews and assessments of 8 individuals, including 4 caregivers (ILSTs) and 4 care recipients (ABI Waiver participants). A copy of the PowerPoint she presented will be included as an attachment when the minutes are distributed.

Points covered in Barbara’s presentation:

• Barbara conducted 34 interviews with 8 participants over 6 months.

• Caregivers viewed their role more from the medical model standpoint – seeing the individuals as needing to be fixed.

• The care receivers looked to the ILSTs to help them, not necessarily fix them.

Kathy Bruni, DSS, indicated that a Participant Experience Survey is going to be implemented in the ABI Wavier to determine level of satisfaction and quality of life.

Provider Updates

• BIAC Updates:

O BIAC is down to 4 ½ staff with no Fund Development Director at the time of the meeting. O The 12th Annual Walk for Thought will take place on Sunday, October 2 at Rentschler Field in East Hartford. Information regarding exhibiting, sponsorship and registration were shared, and are also available online at www.biact.org.

• Kennedy Center: There have been some challenges with the new waiver case managers, but they are working through them. Staffs are attending the EVV training next week.

• DMHAS: DMHAS hosted a meet and greet with DSS and the new waiver Case managers/Axis Agencies, which was well received. Devon Brien-Rushford is at DMHAS for those with substance abuse and brain injury issues.

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• Marrakech: Staff had a rough time with new waiver case managers/Axis Agencies but communication improved and it has been a positive experience. Staff also attended the EVV training.

• Goodwill: Staff experienced some bumps with the new waiver case managers, but they are moving along. They’ve also had some EVV challenges but are working through them.

• Mindscape: Staff have had good experiences with the new waiver case managers. There was some rushing in the beginning to get care plans established but they’ve been very responsive. Staff attended the EVV training. The organization branched out in Norwich and will host a grand opening in September or October.

• Kindred: Nicole Spencer is new to Provider Council, and represents Kindred’s locations in Braintree Manor in Massachusetts. It is inpatient and short-term, with an average length of stay of one year.

• Peter Love: Peter is having a mixed experienced with the new waiver case managers – some are very good, while some are very young with not a lot of knowledge about brain injury and lacking empathy/understanding. Recently attended a training regarding the opioid epidemic, with Charles Watkins presenting.

Provider Standards Workgroup
The group continues to meet to develop Provider Standards. The group is meeting again after the Provider’s Council meeting, and all are welcome to join even if you have not previously attended. Open Discussion: ABI Waiver - Kathy Bruni & George Chamberlin: Department of Social Services (DSS)

• The EVV (Electronic Visit Verification) system for billing will begin September 1 through HP, although an extension can be requested for November 1 as a start date. Bills for August 31st and prior will go to Allied, but beginning September 1 all bills must be submitted through HP. Welcome packets for EVV are coming soon. There is also an FAQ on the HP website, and if the answer is not there you can add the question or reach out to Kathy to get an answer.

• As part of a follow up requested by CMS, DSS will be going out to providers through September to conduct supported employment surveys.

• Kathy has received no negative feedback regarding the new waiver case managers/Axis Agencies – with the exception of one that had not worked with the case managers yet. If agencies have feedback they are encouraged to share that with Kathy so she can follow up. It is necessary for the new waiver case managers to meet with the clients and conservators privately – without the providers present. This is necessary for conflict free case management, required by CMS. As of June 1 the new waiver case managers were responsible for each client and case plan, which is why there was rushing initially. Waiver case managers conduct a reassessment with a structured and comprehensive review of ADLs, cognitive issues, etc. and then they work on a case plan.

• A few agencies have begun implementing the new ABI Group Day, including Mindscapes and Kennedy Center - others have not begun yet, including Goodwill and Employment Options. Providers see it as a good alternative, although some had difficulty initially

3

getting participants interested. Kennedy Center hosted an open house which led some participants to reconsider joining. The ABI Group Day is different from the already existing option of adult day health (non-ABI specific) that is available.

• Regarding applying for the ABI Waiver, there was a question as to whether or not a neuropsychological exam is required. Although it would be required at some point to assist in care plan development and/or the absence of ABI verification it is not required at the time of initial application. There is an understanding that it can be cost prohibitive, depending on an individual’s insurance at the time of application.

Future Meetings

The group discussed inviting the new waiver case managers and Axis Agencies to attend a future provider council meeting as an opportunity for open discussion between DSS, Wavier Providers and new waiver case managers. Bonnie will look to schedule something for a future meeting.

RE: Federal Regulations differ from DSS policy RE: Care Plan and Assessment Meetings

Department of Social Services (DSS) has directed the new case managers of the Acquired Brain Injury Waiver to inform Waiver participants that they are required to meet with case managers without providers of services present during meetings when their plan of care is discussed. Many providers, believing this is the new policy they must adhere to, have not attended meetings or have left during the assessment or development of the plan of care. This is the statement made by Department of Social Services:

"It is necessary for the new waiver case managers to meet with the clients and conservators privately – without the providers present. This is necessary for conflict free case management, required by CMS."

However, this unprecedented new policy restricting participants and providers from discussing the plan of care is being challenged and some providers are in fact attending Assessment and Service Plan Development meetings just as they have done for more than 18 years since the origination of the ABI Waiver. Federal regulations protect the rights of disabled brain injury survivors and outline the process for person-centered planning. In regards to this new policy, Federal guidelines from Centers for Medicare and Medicaid (CMS) are very different from the policy recently set by DSS:

Person-Centered Planning Process: "CMS requires that a person-centered planning process and assessment be used to develop a person-centered plan. The process is directed by the individual, with assistance as needed or desired from a representative of the individual's choosing. It is intended to identify the strengths, capacities, preferences, needs, and desired measurable outcomes of the individual. The process may include other persons, freely chosen by the individual, who are able to serve as important contributors to the process [emphasis added]. The planning process must also include planning for contingencies such as when a needed service is not provided due to the worker being out sick. The contingency or "back-up" plan must become a part of the individual's person-centered plan. As part of the contingency planning process, an assessment of the risks to the individual must be completed and a discussion about how the risks will be addressed must be held."

It appears that participants cannot be forbidden from having anyone they choose, in accordance with federal regulations, at their care plan meetings (Assessment and Service Plan Development). CMS describes the Plan of Care as follows:
Service plan: "A service plan is the written document that specifies the services and supports that are to be furnished to meet the preferences, choices, abilities and needs of the individual, and that assist the individual to direct those services and supports and remain in the community."

The development of a service plan must follow a person-centered planning process as detailed by CMS:

Person-Centered Planning Process: "The process may include other persons, freely chosen by the individual, who are able to serve as important contributors to the process."

Service Delivery Discussions with Providers and the Rights of Brain Injury Survivors in Having Those Discussions

When a brain injury survivor chooses to discuss their service plan with their provider in regards to service delivery, because the participant believes it is important because it relates to service delivery, that participant is well within their right to do so. Many of you may not be aware of the addendum DSS added to your provider's service agreement; the language prevents providers from discussing details regarding changes to the Plan of Care with survivors and conservators. This essentially prevents brain injury survivors from directing the process in regards to their own person-centered planning - please read the language in the "new" ABI Waiver Service provider agreement addendum:

"The Care Manager, not the Provider, is responsible for communicating with a client regarding the Plan of Care, including proposed changes to such Plan of Care. The Provider shall not discuss details regarding the Plan of Care with a client including, but not limited to, the Provider’s desire to change or terminate services, without the Care Manager’s prior approval."

The Plan of Care details all of the services to be provided! If the Plan of Care cannot be discussed by brain injury survivors with their providers then any and all services provided cannot be discussed. This provision goes against the rights of the participant per Federal Regulations and is a manner of control forced upon brain injury survivor that has never existed before.

Release Forms

There are also issues with the release forms participants are being asked to sign, some of the concerns are listed below:

Forms have been presented to participants with no specific end date as to the length of the Release of Information.

Information requested is unnecessary and invasive, the release requests information regarding the:

Family and living situation

Medical

HIV information

Financial

Employment history

Alcohol and/or drug records

And finally, the form states:

"I understand that the information I authorize the Department of Social Services to receive may be redisclosed and no longer protected by privacy regulations, although the Department of Social /Services is subject to the requirements of the privacy regulations."

This is a form no one should be asked to sign, especially not a disabled brain injury survivor!

Please share the language above about the federal regulations and understand your rights when you are asked to schedule any meetings. There are a number of challenges during this time of transition, for example, in some cases the new case manager's do not even have the correct care plans, this of course leads to concerns as to how survivors plans will be discussed and reassessed when the correct information is not available. We are asking DSS to change the language in the Waiver addendum so that those who are "freely chosen by the individual, who are able to serve as important contributors to the process” are fully included in the planning and assessment process of the service plan. Providers are essential to person-centered planning and especially during this difficult time when every single case manager has been replaced by someone not only new to the survivor but new to the ABI Waiver program, the language preventing them from being included must be removed.

Thank you
CTBISN - Elaine Burns

This is all you need to do

Craig Sears
Brain Injury Survivor

A simple guide to starting a local brain injury support group

What is a support group? Do I need one?

A support group offers the opportunity to share information and to support one another in an environment of empathy and understanding. It is often from others in like situations that the best solutions to problems can be found. Difficulties and emotions can be discussed freely without judgment, and new friendships can be forged.

Often after an illness or injury, getting on with life is not as simple as one would imagine, especially if that injury or illness leaves the individual with life-long impairments. This is especially true with brain injury. Both the individual and the family often struggle to adjust to the life changes that result from the brain injury. Getting information and services can often be a maze of confusing and conflicting situations, which can lead to frustration.

It is not uncommon for friends to disengage and for extended family to become less involved in day-to-day activities. The family and the individual with the injury can become more and more isolated. As social contacts dwindle, so does the opportunity to interact with others, and there are few outlets for dealing with the emotional aspects of lifestyle changes created by the illness or injury. Questions often remain unanswered, and the feeling of being alone in the situation intensifies. If this describes you and/or your family, you may benefit from a support group. Individuals often want education or would like to educate others about brain injury. Support group members can work together to educate the community on brain injury issues.

I need support: how do I find a support group?

In some areas there are established brain injury support groups, but small towns and rural areas are frequently less likely to have a local group. It may be necessary to look in the nearest city to locate the group closest to where you live. Local groups often meet at hospitals, churches or other public facilities, and in some cases in private homes.

Information on existing brain injury support groups in your area can be obtained from the Brain Injury Association in your state.

If a support group is available, it is important to realize that members’ schedules and attendance may vary. It is wise to attend a support group several times to determine its usefulness to you. If there is more than one support group available, it is recommended that you attend each in order to determine the best fit for your needs.

What do I do if there is no support group available?

There are many support groups that exist today because survivors and family members saw the need in their own community and became instrumental in forming one. Initially this may seem an overwhelming task. Starting a support group does require effort and determination, but it can be a very rewarding experience that will benefit all who participate in the forming of a local group. There is no set formula for establishing a successful group, because each community differs in many ways, and these differences can greatly affect the steps necessary to form a group.

Does our community need a support group?

If so, how do I start one?

The first step in forming a support group is to determine the need. A need is present when two or more persons would benefit from sharing information and empathy. Almost everyone knows or knows of someone who has sustained a brain injury. Ask friends and relatives if they know of persons who may be interested. People in need of support may travel relatively long distances to participate in a group, so do not limit your exploration to just your own neighborhood.

Once you have compiled a list of people who may be interested in the support group, contact the persons you have learned about or ask that they contact you. Some of those you contact may express an interest in helping get the group started. If even one other person expresses interest, you have established that there is a need.

With the need established, and the first few participants lined up, you are well on your way to becoming an active support group. It is time to start putting the elements in place to make it a reality. Encourage those who are willing to help and share the responsibility. At this point you may want to schedule a planning meeting to determine what steps need to be taken and who will assume responsibility for each step, such as locating a meeting space, refreshment donations and determining a meeting day and time.

It is important to remember that support groups vary greatly from one to another. Each group will form its own unique characteristics as it takes shape, so encourage others to offer ideas and perspectives.

Finding a location for the support group meetings: Where do we look?

Finding a location for the group to meet is the next step in forming the support group. While it is impossible to estimate what participation level your group will reach, it is best to assume that it will grow. Finding a location that will accommodate growth is important. It is usually not difficult to find a facility or organization that will offer free meeting space. Some will even provide refreshments.

Many hospitals welcome the opportunity to participate in programs that benefit the communities they serve. Wheelchair accessibility and being easy to locate are also important factors to consider. Hospitals are easily identified in the community, which makes them good meeting locations if they are willing to provide space. Other options include local churches or civic organizations that may have a meeting room that could accommodate the support group meetings.

After identifying several possible meeting sites, you will need to contact those facilities to determine the best person within the organization to talk to about facility use. Request a meeting to discuss the possibility of allowing your group to meet at their facility. Do not jump at the first offer of space unless it totally meets your needs, and do not get discouraged if some of the facilities you contact are uninterested.

We need to publicize: How do we let people know about the support group?

One of the most important steps in the process of starting a group is to identify ways to get the information to those who may be interested. Following are some suggestions to help advertise your support group.

• Contact the media. This should include not only your town or county, but those surrounding it as well. Media can include newspapers, radio, television and in some cases tabloid-type publications. Contact each media source, give them the information about the support group and request that it is included with their public service or community events announcements. If possible, try to get a feature article about the start-up of the group. A good way to do this is by contacting the person in charge of health reporting and scheduling a time when you can meet with them to share information on your plans. Include facts about brain injury so the 3 media will understand the importance of this group. Be sure that each reference to the group contains the correct contact information as well as meeting locations and dates if that has been determined.

• Notify professionals in your area of your intent to start a support group. Professionals can include physicians, therapists, nursing agencies and health and human service providers and organizations. You can contact these professionals by writing a letter and stating the intent to establish the support group, the purpose of the group and the location of the meetings, if that has been determined. Ask that they refer any patients who may benefit from the group. Again, be sure to include complete contact information.

• Notify churches or civic organizations to request that the information be included in their newsletter or bulletin. Again be sure to include complete details and contact information.

• Contact your state Brain Injury Association to notify them of your plans to form the new brain injury support group and ask them to provide information about the group to contacts in the local area. If they have a publication, you can request that the support group information be included in the next edition and that your information be filed for referral purposes as well as placed on their Web site.

• Do not be disappointed if you hear from only a few individuals initially. As long as you and one or two family members or survivors are interested, you have the basis for building a support group. Many of the existing groups began with three or less participants and have grown to large groups.

• Organization is important at this stage. Create a list from all of the contacts you receive so that when the first meeting is scheduled you will be able to contact those who expressed interest.

• Start a mailing and phone contact list that you can add to as you receive calls from those who are interested. Refer to page 5 for an example of a contact log. Information needs to be organized and stored together in one location so that it is readily available when you need to add to the listings. Using a notebook is recommended to organize the information and make it readily accessible.

• When you are contacted by a person who is interested in the group you should ask questions that will help you understand any specific needs of the caller, such as what meeting times would be best, special interest information and whether they would be able to help organize the group. Make sure that the contact information is complete so that you can contact them.

Name: ________________________________

Address: ______________________________

City/State: _______________ Zip: ________

Email: ________________________________

I would like to help organize the group:

• Yes or No

Other information:

______________________________________

___________________

___________________

Home phone: __________________________

Cell phone: ____________________________

Preferred meeting schedule:

Day: ______________ Time: _____________

Interest: o Family member

• Survivor

• Professional

Special interest:

______________________________________

Support group contact log

Name: ________________________________

Address: ______________________________

City/State: _______________ Zip: ________

Email: ________________________________

I would like to help organize the group:

• Yes or No

Other information:

______________________________________

______________________________________

Home phone: __________________________

Cell phone: ____________________________

Preferred meeting schedule:

Day: ______________ Time: _____________

Interest: o Family member

• Survivor

• Professional

Special interest:

______________________________________

Name: ________________________________

Address: ______________________________

City/State: _______________ Zip: ________

Email: ________________________________

I would like to help organize the group:

• Yes or No

Other information:

______________________________________

______________________________________

Home phone: __________________________

Cell phone: ____________________________

Preferred meeting schedule:

Day: ______________ Time: _____________

Interest: o Family member

• Survivor

• Professional

Special interest:

______________________________________

Planning and scheduling the first meeting: How do I contact people?

After you have made all of the initial contacts, found a location for your meeting and created a mailing list of those who expressed interest, you are ready to schedule the first meeting of the support group.

Contact the facility where the meeting will be held and schedule a mutually agreeable date and time for the meeting. It would be best to choose a time when most of the individuals who expressed interest could attend.

Try to avoid times where traffic and other issues could keep people from attending. Once there is an established date and time for the meeting, you must notify those who have expressed interest in attending. Contact those individuals who have expressed interest by sending a notice to those on the mailing list you have developed. The notice should include meeting time, meeting location and address and a contact name and phone number. If a speaker is scheduled, the speaker’s name and the topic to be addressed should also be included. This may be followed up by a phone call to encourage participation. Contact the local news media and request that the meeting information be included in their community calendar or upcoming events listing. Most local newspapers, radio stations, TV stations and cable companies offer this as a public service with no charge. Also contact local churches, healthcare providers and civic organizations and give them the meeting information.

Refer to page 7 for a meeting preparation checklist.

The first meeting is scheduled: How should it be conducted?

The first meeting should be an informational meeting that allows for introductions of the individuals who attend and explores the needs of the participants. Keep in mind that a support group will be defined by the dynamics of the individual members. As the organizer or facilitator, you will need to take notes and listen carefully to the ideas and issues discussed by others. This will help you steer future meetings toward fulfilling those needs. Allow the group to develop naturally so that it will meet the needs of the participants.

Meeting preparation checklist

Meeting location: __________________________________

Date: ________________________ Time: _________________

• Media notified

• Reminder cards mailed

• Phone contacts made

• Refreshments arranged

• Speaker confirmed (if applicable)

• Name: ____________________ Phone: ___________________

• Meeting materials prepared:

• Name tags o Note cards

• Pens o Paper

• Handouts and other program materials

Notes:

_________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

As the group develops, encourage ownership of the group by the members by assigning them responsibilities. As the primary organizer, be prepared to lead and facilitate the meeting. The following tips are helpful when organizing the group.

• It is important to arrive early and have refreshments set out and seating arranged. If possible, arrange seating in a circle or around a table to encourage interaction. Having these chores out of the way will allow you to be free to greet people as they arrive. Refer to page 10 for a sample sign in sheet.

• As people arrive ask them to sign the sign-in sheet and point out the refreshments. Encourage them to serve themselves and to make themselves comfortable. Introduce persons visiting for the first time to those group members. This will encourage conversation.

• Name tags should be used so that you will be able to address each person by name when talking to them or making introductions. They also encourage group members to become acquainted and create a sense of belonging, which is essential in a support group.

• Have any handouts or materials prepared in advance of the meeting. They can be placed on each seat in advance so early arrivals can review them. It is important to remember that you are drawing together strangers and that each person has a different comfort zone. Some will socialize immediately while others will sit quietly and look through any available materials. Allow at least 10 to 15 minutes for people to arrive and socialize if they wish.

• Open the meeting by introducing yourself to the group and giving a brief personal overview. It is appropriate, and necessary, that you share openly and honestly whatever life situations that have led you to start the group. This may serve as an icebreaker and make those in the group more comfortable in sharing their own stories. It is important that group participants feel comfortable sharing their information with each other. Ask that the information shared within the group be treated as private and confidential. Some individuals will feel more comfortable sharing information if they understand it will not be discussed outside the meeting.

• Ask each participant to briefly share his/her story with the group if they wish. Do not pressure those who seem reluctant to share information. Each person must be allowed to participate within his/her own comfort zone.

• When preparing the agenda for the meeting, schedule time at the end of the meeting for the group to socialize. This will give individuals an opportunity to discuss individual issues with the speaker and the other group members.

• Allow 10 to 15 minutes before the time scheduled for socializing, start bringing the meeting to a close. Thank the group for sharing, give your contact information to each person and make sure everyone has placed their contact information on the sign-in sheet. Give the group the date, time and location for the next meeting (if one has been planned) and remind them that the information on the sign-in sheet will be used to notify people of the next meeting.

The first meeting may continue after you have closed it. Encourage social interaction and allow people to leave at their own pace, Make yourself available for questions.

Be prepared for some people to become emotional. This may be the first opportunity some have had to share their experiences after brain injury. Allow time for composure if individuals become emotional and tearful. It is recommended to have tissues available. It is important that each person be given a chance to speak. Allow others to empathize with the emotional participant and then guide the meeting back to the agenda. After the first meeting it is not necessary for each group member to share his/her story.

After those attending have shared their stories, it is time to start to develop the group goals and to establish what those present hope to gain from attending the group. This can be determined by a combination of a questionnaire and discussion. Many issues are similar, while some of the group may have some unusual and specific needs. It is important to include all issues even if it applies to one person. Inclusion is what makes a support group successful.

A questionnaire may help start conversation and give the group organizer a clear idea of what types of needs are most prevalent in the group. In addition, it provides information on members interested in taking on a leadership role with the group. Following are examples of a sign-in sheet and a sample questionnaire. The questionnaire can be filled out during the first meeting. An open discussion of the answers can be helpful in identifying common concerns and interest. Refer to page 11 for a sample questionnaire.

We now have a support group: How do we keep it going?

Just as starting a support group takes work and organization, so does keeping it going. Some of the most important things to remember are:

As long as two people attend, you have a support group.

Keep the meeting date and time consistent each month.

It is important to plan meetings well in advance and to notify everyone on the mailing list as well as the local media.

Encourage group participants to decide on speakers and program content.

Share responsibility. Ask others to participate in the meetings by providing refreshments and planning other activities.

Brain injury support group sign-in sheet

Date: _____________________

Name Address Contact information

________________________ _________________________ _____________ /__________ Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Brain injury support group questionnaire

Name: (optional) _______________________ Phone number: ________________________

Address: ______________________________ City/State: __________________ Zip: _____

What do you feel are the most frustrating things that you are currently dealing with?

_________________________________________________________

__________________________________________________________

Do you feel that services for individuals with brain injury are adequate?

• Yes or No please explain why:

________________________________________________________

Are you and your family getting the services you need?

• Yes or No what services do you need that you have not been able to find?

__________________________________________________________

__________________________________________________________

What do you hope to gain from participating in a support group?

__________________________________________________________

__________________________________________________________

> What type of speakers or other information would most benefit you?

__________________________________________________________

__________________________________________________________

Do you feel that the time and location of the meeting is convenient?

• Yes or No how often would you like the group to meet?

__________________________________________________________

Would you be interested in helping lead the group or helping with future meetings and events?

• Yes or No if yes, how will you be able to help?

__________________________________________________________

__________________________________________________________

Comments:

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

The support group needs a sponsor: Where do we look for help?

Even with a small local support group there can be some cost. Postage, the cost of copying handout materials and phone calls can add up over time. Unfortunately, many of the people who attend support groups deal with fixed or limited incomes and are unable to contribute to these expenses. Finding a sponsor for the group may be the answer, and may be easier than you think. Examples of possible sponsors include hospitals, human service providers, health organizations, civic clubs, etc. Asking for donated services is one way to gain the financial assistance for your support group, as well as asking for cash donations. The first step in this process is to make a list of the expense items and match each one to a list of businesses and organizations within your community. Approach each with a written description of your support group and its goals along with a request for the specific items or services that you need. Below are some examples of community supports:

Churches or businesses, as community outreach, can offer the use of copy machines and can include support group mail-outs in their postage budgets.

Grocery stores can participate by donating refreshments for meetings.

Local physicians, medical personnel and community organizations can participate by donating literature that would interest the group.

Businesses can be asked to assist by sponsoring special outings or sponsoring events that the group can attend.

Local entertainment, such as theaters, sport teams and other public venues, may be approached for free admission for group members. Maintaining a treasury may not be necessary in the early stages of forming a group. However, it may be something to look at in the future. Many groups use the natural supports within the community. If the group receives cash donations, keep records and receipts of what the money was used for.

The future of your group

If you have put the basics of this guide into action, you now have a functioning support group within your community. As your efforts reach others, and your group grows, it is important to remember the principal reason for the support group. We will end this book the same as it began, by reminding you of why you formed the group. A support group offers the opportunity to share information and to support one another in an environment of empathy and understanding. It is often from others in like situations that the best solutions to problems can be found. Difficulties and emotions can be discussed freely without judgment and new friendships can be forged.

For additional information about brain injury, or support groups in your area, contact your state Brain Injury Association in your state.

“Things work out best for those who make the best out of the way things work out!”