Life: After Traumatic Brain Injury · Craig’s story

September 2, 2018

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 number one leading cause of death and disability, Please take a few minutes 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

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”.

My Life: Before and After a Traumatic Brain Injury Craig’s story

As a young boy, my sister and I grew up in a nice family oriented neighborhood in Fairfield Connecticut by Perry’s Mill Pond, with the added benefit of family living across the street. There were woods with ponds and dirt trails where we would all hang out and build forts, go fishing and swimming, as well as ride our mini bikes and go carts. In the winter months, we would go to the next block over and go ice skating and play hockey. It was amazing and I used it as my escape from all the dis-function and drama at our home.

My home life was not as serene as my life in the woods and on the trails, was. My father was an alcoholic and was barely around to interact with us. 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 were 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. Their house was quiet and stable and there was no fighting.

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 go fishing and again what we caught we would take back to my grandmother and she would cook them for us. She was a good cook and I enjoyed eating her meals. 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. They always made sure that we were taken care of and had food to eat.

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 grocery 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 understand today how much this affected me; I no longer had my safe haven. I was forced to deal with the turmoil at home that occurred on a daily basis.

At school I started having trouble early on; I always had trouble with my reading and my spelling. I couldn’t keep up with the rest of my class. I had gone in for testing and was diagnosed with a learning disability called dyslexia, and was transferred into special education classes. I would get picked up in front of the house by a small school bus, and my sister and some of the other kids around my neighborhood started making fun of me. I began to rebel and started skipping school. I would rather hang out in the woods on my mini bike instead of facing the daily issues. 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 or McDonalds. I can say it didn’t help me because I learned how to play the system quickly. I learned quickly how to manipulate the system and how to get the teachers to give me what I wanted. I wish I had a teacher who forced me to do the work in school 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 had pushed me to apply myself.

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 by experience. 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 started working more doing landscaping and odd jobs around the neighbor’s 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 all the time 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 checked 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 from my 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 eighteen I had been to 2 different proms. I had a lot of good times. With my popularity also came constant run in 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 she had broken up, so I immediately asked her out on a date. We started seeing each other on a regular basis. I stopped hanging around with the crowd I was always with and started to focus on my relationship with her. When I would go to her house to pick her up, her family would always welcome me with open arms and made me feel like I was part of the family. Her family would even take us out to dinner. I started staying home more; and her and I started getting very close. We would stay home, watch movies or go out to dinner. During the Holiday Season, we would go to New York City and go on the horse and buggy ride through Central Park. I even remember going to the malls around us to look at all the Christmas decorations and to get ideas on what to buy each other for Christmas. We would even write letters to show our appreciation for one another. We always enjoyed each other’s company, and I started living what I called my American dream.

There were also days when we would go to the park and would see parents with their children fishing and swimming, just enjoying themselves. After dropping her off at night, I would go home and call her and we would sit on the phone for hours on end talking about kids and the future. It was like a whole other life for me, made me start to really think more about what I wanted out of my life. That’s where I started to fall in love! I really started to focus more and looking at life in a whole different way. I started respecting my mother a lot more, that’s when I started jogging with her and just being more of a son to her. In some way, it scared the hell out of me because I didn’t know what this life was all about. This was a big milestone in my life, I began to mature, but in a heartbeat, it was all gone.

I had just turned 20 and after a night out together, I went home to go to bed. The next morning was July 9, 1987, that morning started out like every other day would. I woke up at seven o’clock like I always did, and went to work. I finished up early and got on my motorcycle and went over to one of my friend’s houses to relax and hang out. One of my other friends drove by and stopped, said he had a race coming up that night and needed help tuning up his car. 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 out to a local hospital and put me in a mental health ward. (I was told there were no other services offered for people with traumatic brain injury.) 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 snick 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. Keep in mind traumatic brain injury is not a mental illness. Due to the lack of knowledge and education people were unaware of what Traumatic Brian Injury is.

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 serious. It became harder and harder to find where I fit in. For example, 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. Every time that I would ask for help it resulted in me constantly being thrown into Fairfield Hills State Hospital Located in Newtown CT… Or other state Psychiatric Facility’s – institutions. Again I was told was no other services offered for people with TBI. After being 4 points restrained and forcefully drugged multiple times and having other patients spitting, urinating, throwing shit 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 me. My life turned into a constant tug of war.

One day, 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 Metropolitan Transportation Authority (MTA) 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 MTA police dog was attacking me. They accused me of trying to kick the dog. I knew this was not true 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 state psychiatric hospital 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.

That’s when I started to realize that a lot of my things were going missing. When I realized my celli 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 collie 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 is 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. Due to lack of services for TBI sufferers, I was again homeless. I was walking down a road and I needed to pee and nothing was open. Due to my previous experience with the MTA dog, I was very leery to relieve myself outside. So, when I saw a garage open I went inside and took care of business. As I turned around I saw a Fairfield Police Officer standing there. I asked him, “is there a problem officer?” The next thing I knew I felt a hand on the back of my neck and I was thrown to the ground. From there I was handcuffed and thrown in the back of a police car. The police officer got in the car and once he was driving, I asked again “What’s wrong, I was just taking a piss?”

The next day I was brought to court, from there to Bridgeport Correctional Center. I was housed and brought back and forth and the last day I was brought to court I was told by the Public Defender/”pretender” that I was going to the Connecticut Valley hospital into 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. Bridgeport 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. 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.

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!

During my incarcerations, I suffered many indignities and witnessed atrocities. I spent years locked up twenty-three and a half hours a day, only being allowed out to shower and make a phone call. I was constantly sent to the medical ward and stripped absolutely naked and left there for days or weeks at a time. I’ve witnessed murders and rapes, and there were even 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.

Somehow, I survived to be released. 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. But I try my best to help those with Traumatic Brain Injury (TBI) get the help we need, and to avoid the mistakes, and missteps I made.

“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.”

On February 8, 1990, the Connecticut Traumatic Brain Injury Association filed a class action lawsuit against the Connecticut Departments of Mental Health and Mental Retardation and various state hospitals in the United States District Court for the District of Connecticut. Plaintiffs were a class of persons with intellectual disabilities or traumatic brain injuries and who were or may be placed in Norwich or Fairfield Hills Hospitals. They were represented by Connecticut Legal Services, the Connecticut Office of Protection and Advocacy, and private attorneys. The complaint alleged violations of the Equal Protection and Due Process clauses of the Fourteenth Amendment, the Rehabilitation Act of 1973, and the Americans with Disabilities Act. Plaintiffs sought to enjoin the practice of placing non-dangerous brain injured individuals and individuals with intellectual disabilities in state hospitals for the mentally ill, where necessary treatment and training was not available. After years of being thrown into this deplorable life of hell, I became a member of the class action lawsuit implemented in 1998. Even though it was too late for me at the time because I was already incarcerated; they refused to help. I immediately requested that I be provided a program upon my release from prison.

Choosing to go into this program on the day of my release was hands down the best decision I ever made in my life! This truly remarkable program not only made an incredible difference in my life but also in the lives of many other brain injury survivors and families.

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 Western CT was able to get me into a program after 16 years of being thrown into this deplorable life of hell!

Going through the program, Goodwill really opened the door for me. In 2008, Goodwill Industries awarded me for Achiever of the Year for outstanding individual accomplishment and vocational progress. I was recognized for my work in developing a Traumatic Brain Injury / Acquired Brain Injury (TBI/ABI) social group at Goodwill Industries. The goal of the group, the first of its kind in southern Connecticut, is to provide adults with TBI/ABI an opportunity to meet and socialize in a safe and healthy environment. I am proud to say this program is up and running to this very day. During and after the program, I needed to find a place to call home, after 18 years of waiting and being turned down; I turned to a local Congressman’s office for help, Former Congressman Christopher Shays. Within 2 months, they cut through the red tape, and I finally received recognition of my Traumatic Brain Injury. And I was accepted into a HUD subsidized housing unit.

Being awarded by Goodwill meant a lot to me but having my mother & grandmother as well as my father there meant just as much. It was around the time that they were doing all radio, TV, workbooks, banners and posters on my efforts to putting a voice to Traumatic Brain Injury. It was also around the same time that I had joined The Connecticut Traumatic Brain Injury Advisory Board, and I was on the board with the State of Connecticut’s Health Service Program Director for the Department of Corrections, who I invited to the award ceremony. Have you ever heard the phrase “Don’t judge a book by its cover? Call it getting a big head, but it was almost like I was saying “Hey look at me, with support, hard work and a voice anything is possible for change”.

The US says we have rights; but the State’s trample all over them as if they are immune to our civil rights.

Due to my injury I have memory problems, speech problems, balance issues and many other things. I am disabled because of this and receive services from the state, which enable me to remain in the community instead of in a nursing home, in prison or on the streets. However, the State of Connecticut wrongly took away those services, for no reason and without notice.

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

Fair Hearing Statement for Craig Sears
Prepared by Jessica, Human Services Advocate

Craig Sears is an independent man with a brain injury. He has 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, Mr. Sears was imprisoned and institutionalized. It is Mr. Sears’ goal to continue to strive for independence with appropriate supports, and to continue his advocacy efforts for other survivors. With these goals in mind Mr. Sears’ ABI Waiver Service plan was developed in a truly person-centered cooperative team approach. His specific needs and goals were addressed through the design of a unique employment support program, and structured services that address his needs.

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

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. When Mr. Sears exercised this right to choice, DSS refused to authorize service provision and payment to an alternate DSS/ Allied approved provider of his choice, resulting in a complete absence of services for Mr. Sears. Sec. 17b-260a-1J7 states that it is the responsibility of the Department to pay for approved ABI waiver services delivered by qualified providers through its fiduciary agent on behalf of the individual.

While the Department may argue that a review of Mr. Sears’ service plan is necessary, additional evaluations are requested, etc., it cannot hold his services in suspense while these decisions are made by his team. Mr. Sears’ has a current Department approved ABI Waiver service plan. The Department has a responsibility and an obligation to provide Mr. Sears with these services until such time as any changes are made to his plan. Sec. 17b-260a-1J2c Responsibilities of the Department, The Department shall assign social work staff to execute the following ABI responsibilities: implement the approved service plan and coordinate services provided to the individual under the waiver. Furthermore, the Department has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. This was done without an ABI Waiver team meeting, and in absence of Mr. Sears, his appointed advocate, and a neurophysiologist familiar with Mr. Sears. Sec. 17b-260a-1G4 the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Department social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.

Mr. Sears requests the immediate re-instatement of his ABI Waiver plan, as written. By withholding both the authorization to provide services and payment, to an authorized provider, the Department has placed Mr. Sears at risk of re-institutionalization, has halted his means of financial self-support, has left him without the ability to meet his own basic needs, and has neglected to support him in the least restricted environment available. stricted environment available.

Fortunately, I am a strong advocate for myself and after many phone calls, including to my local U.S. Congressman’s office, I was able to have them reinstate my services – but not without cost to me as I went for so long without getting the services I needed.

My back is against the wall.

Over time everyone in my family has moved out of Connecticut and they have asked me to go with them, I looked into it and was told that there is a 5-year waiting list for any ABI Services, and in order to get on the waiting list in that state that I needed to live there for 2 years before I got put on the list; been there, done that. It’s bad enough trying to find anyone that knows anything about brain injury. I’ve been a participant in the Acquired Brain Injury (ABI) Waiver Program for several years in CT and I have YET to find anyone that I don’t need to tell what to do, or anyone that does not talk down to me like I’m a 2-year-old, or even try to get one over on me! I have kept in this “box” where I’m very limited on what I can do. I believe that my rehabilitation has been curtailed as a result. I am frequently required to see a doctor or go into a state team meeting and prove that I am disabled.

It’s designed to take advantage of people with disabilities. Another person with a Traumatic Brain Injury in my shoes would likely not have had the ability to advocate for him or herself as I did, and without services they would not have anybody else willing to do it on their behalf. This is a very disturbing situation and it shows how easy it is for states to discriminate against and take advantage of someone like me – it’s like taking candy from a baby!

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. I found my voice for TBI. In January, I was approached by the Sarah Jane Brain Project. The Brain Project heard about me and my story, and they have since used that as part of a nationwide campaign to show an example of what can happen when brain injury goes untreated. It’s been an honor and a privilege to be a part of their historic and ground-breaking work. Everywhere I go in my travels, I meet new people. And my story seems to resonate with all who hear it. My advocacy started as a means to overcome my own difficulties. Now, it’s become my mission to make sure that no one else has to go through what I have.

The Sarah Jane Brain Foundation is one of the leading organizations in the country dealing with pediatric acquired brain injury (PABI), and its Advisory Board is comprised of over 200 leading experts from just about every major medical institution (from MD Anderson and Johns Hopkins to Mayo Clinic and Mount Sinai) and research university (from Harvard and Yale to UCLA and UNC) in the country. This Advisory Board created the National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of PABI families across the country. Transitioning into an adult greater Independent Living.

The PABI plan calls for the development of 52 State Lead Centers of Excellence, which would, among other things, have case managers specially trained to assist children and young adults with brain injuries. If the National PABI Plan was in place, that case manager would have stepped in during my crisis and been my advocate. These people would be trained to help those who cannot help themselves.

I appeared regularly on a talk show on Citizens Television, Inc. With the U.S. Department of Veterans Affairs New Haven Vet Center Readjustment Counseling Svc. Title of Show. “The Sandbox Chronicles,” getting the word out to our OEF/OIF Veterans, I was also asked by the State of Connecticut’s Health Service Program Director for the Department of Corrections to assist with the re-entering for inmates with Traumatic Brain Injury as a peer support mentor. I can easily relate and help these inmates because I have been there; done that in the same system and process they are going through. I will be informing the inmates about what is available for after care re-entering into society. Cable News 12 did an editorial on brain injuries, featuring me. Cablevision editorials featured me as their Hometown Hero segment on my efforts to putting a voice to traumatic brain injury in hopes that it will help present and future people dealing with the challenges and changes of Traumatic Brain Injury. In recognition of my years of Traumatic Brain Injury advocacy efforts; Sarah Jane Brain Foundation has named me to the Family Committee of its National Advisory Board. “I was told by a lot of good people that I was kept around for a reason. Maybe this is it.” The lives of all the Family Committee members have been directly touched by Pediatric Acquired Brain Injuries (PABI). They are either PABI survivors like me, or parents of children injured or killed by a brain injury. Their combined experiences are helping to shape the Projects message, goals and policies.

2009. I’ve also taken part in their nationwide PABI Hero’s Tour. In Boston, MA, New York, NY, District of Columbia, DC, Raleigh, NC, Helena, MT, Madison, WI, Lincoln, NE, Atlanta, GA, Miami, FL, Birmingham, AL, Pittsburgh, PA, Columbus, OH, Chicago, IL, Dallas TX, Denver, CO, Tempe, AZ, Los Angeles, CA, Seattle, WA “This was a blessing to me, it gives meaning to my many years of struggle”. The purpose of the tour was to raise awareness and create philanthropy for local PABI families across the country. Each host institution listed in the tour schedule conducted a two-hour panel discussion surrounding one of the seven Categories of Care as outlined in the National PABI Plan. I also got to present my personal experience/story at the National Institute on Disability and Rehabilitation Research in DC. While speaking with several US Congressmen’s about my experience, and in hope to make a difference, I’ve even gotten to present my story at the US Capitol for the announcement of the PABI List of State Lead Centers.

2010. Part of the “Voice for My Child” team, every 40 seconds an American child or young adult enters an emergency department suffering from a brain injury; the leading experts in our nation dealing with brain injuries have come up with a broad-based, bi-partisan plan to prevent, identify and treat our American youth with over 110 Members of Congress already endorsing it; however Democratic Congressman Frank Pallone from New Jersey and a few of his colleagues on the Energy and Commerce Committee refuse to even allow an up-or-down vote. Does Congressman Frank Pallone really not care about families who have a child or young adult suffering from a brain injury or is he so arrogant he thinks he knows better than the leading experts? I appeared regularly in Washington DC on Capitol Hill with Patrick and Sarah Jane Donohue giving my testimony on living with a Traumatic Brain injury. Etc.

2011. I am pleased to report that Congressman Leonard Lance (NJ-6) announced federal legislation to implement the H.R. 2600: National Pediatric Acquired Brain Injury Plan Act at Overlook Medical Center on Thursday, June 30, 2011. Joining Congressman Leonard Lance Patrick Donohue and his six-year-old daughter Sarah Jane the namesake of the Sarah Jane Brain Foundation, along with Traumatic Brain Injury Survivor Craig Sears and other families’ advocates and professionals then again on Wednesday, July 20, 2011, H.R. 2600: National Pediatric Acquired Brain Injury Plan Act Room HVC 214 in the Capitol Visitor Center, East Capitol Street NE, Washington, DC 20515.

“This act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries,” Geiger-Parker said. “We applaud Congressman Lance and the other members of Congress for so-sponsoring this critically important, groundbreaking legislation.”

“The PABI Plan Act would create a national network of 52 state Lead Centers of Excellence, one for every state, plus the District of Columbia and Puerto Rico, with the responsibility of implementing the PABI Plan on their own state’s unique demographics, geography, laws, infrastructure, financing, and causes of brain injury without duplicating current practices.”

“In addition, this legislation will focus on individuals with a “mild” traumatic brain injury, which accounts for 80 percent of brain injuries each year, commonly referred to as concussions, as well as rural communities, which make up 25 percent of the population and have higher incidence rates of brain injuries.”

“For example, the 52 state Lead Centers would help children suffering from sports-related injuries by providing additional information, resources and care. Donohue pointed out that the federal government spends less than $10 million a year on traumatic brain injuries — a fraction of what is invested in research for other illnesses and diseases with much lower incidence of occurrence.”

2012 – Providence, R.I. – Governor Lincoln Chafee and Congressmen James Lange in (RI-2) and David Cicilline (RI-1) will recognize Brain Injury Awareness Month at the State Capitol on Wednesday, March 14, 2012, by welcoming Sarah Jane Donohue, Craig Sears and other brain injury survivors and advocates. The event will highlight Representatives Langevin and Cicilline’s co-sponsorship of HR 2600, the National Pediatric Acquired Brain Injury Plan Act (PABI Plan Act). The $2.9 Billion, seven-year federal initiative is the largest in the nation’s history to prevent, identify and treat the #1 leading cause of death and disability for American youth: brain injury. In addition, Governor Chafee will be highlighting the more than $32 million the legislation will bring back to Rhode Island, Hasbro Children’s Hospital’s lead role, and Rhode Island’s leadership in treating brain injury and other brain-based disorders. Sarah Jane’s father, Patrick Donohue, will discuss how the experiences of his daughter inspired him to start the Sarah Jane Brain Foundation (SJBF), establish partnerships with brain injury facilities nationwide and work with Congressmen Langevin and Cicilline to introduce the groundbreaking legislation being discussed at the event. WHO: Governor Lincoln Chafee Congressman James Langevin (RI-2) Congressman David Cicilline (RI-1) Sarah Jane Donohue – six-year-old namesake of the Sarah Jane Brain Foundation Patrick B. Donohue, Esq. – father, Sarah Jane Donohue and founder, The Sarah Jane Brain Foundation Dr. Carole Jenny – SJBF State Lead Director, Department of Pediatrics, Hasbro Children’s Hospital Dr. Victor Pedro – SJBF Advisory Board Member, Founder, Rhode Island Integrative Medicine WHAT: Press Conference highlighting Brain Injury Awareness Month WHY: Pediatric Acquired Brain Injury (PABI) is the #1 leading cause of death and disability for American Youth (over 765,000 new brain injuries annually, over 80,000 hospitalizations and over 11,000 deaths). HR 2600 will fund over $32 million to Rhode Island to develop a seamless, standardized, evidence-based system of care for all families that have a child or young adult suffering from a brain injury. Hasbro Children’s Hospital is the SJBF State Lead Center for Rhode Island. Local neurorehabilitation expert, Dr. Victor Pedro, has pioneered an evidence-based, unique treatment therapy called Cortical Integrative Therapy which is changing the way brain injuries and other brain-based disorders are treated. WHEN: Wednesday, March 14, 2012 at 11:00 a.m. WHERE: State Room – Governor’s Office 222 State House Providence, RI Collapse this post

2012 – I appeared with Patrick and Sarah Jane Donohue the six-year-old name sake of the Sarah Jane Brain Foundation in Washington, DC. A Review of Efforts to Prevent and Treat Traumatic Brain Injury; The Subcommittee on Health hearing on Monday, March 19, 2012, at 3:00 pm in room 2123 of the Rayburn House Office Building entitled “A Review of Efforts to Prevent and Treat Traumatic Brain Injury.”

2012. SARAH JANE and FRIENDS GO TO CITY HALL TO THANK NY CONGRESSIONAL DELEGATION Bi-Partisan Support of HR 2600 Recognized During Shaken Baby Syndrome Awareness Week/Child Abuse Awareness Month; New York, N.Y. – Sarah Jane Donohue, the namesake of The Sarah Jane Brain Foundation, and other families impacted by Shaken Baby Syndrome and other brain injuries was joined by Congressmen Michael Grimm (NY-13) and Bob Turner (NY-9) to thank them as well as the other Members of the New York Congressional delegation who have co-sponsored HR 2600 at a press conference at City Hall in New York City on Friday, April 20th at 11:00 a.m. The event was held during April since it is Child Abuse Awareness Month as well as Shaken Baby Syndrome Awareness Week. The event highlighted the bi-partisan support by Representatives Grimm, Hayworth, Israel, King, Maloney, Rangel, Reed, Tonko, Towns and Turner of HR 2600, the National Pediatric Acquired Brain Injury Plan Act (PABI Plan Act). The $2.9 Billion, seven-year federal initiative is the largest in the nation’s history to prevent, identify and treat the #1 leading cause of death and disability for American youth: Brain injury!

The Sarah Jane Brain Foundation (SJBF) is an advocacy organization in the field of Pediatric Acquired Brain Injury. The foundation was founded in New York City in 2007 by Patrick Donohue, whose daughter was violently shaken by her baby nurse when she was just five days old, breaking four ribs, both collarbones and causing a severe brain injury. The mission of the Sarah Jane Brain Foundation is advance knowledge of the brain and to change the world for Sarah Jane and the millions worldwide who suffer from the #1 leading cause of death and disability for youth, brain injury. One of its primary goals is to fully fund and implement the National Pediatric Acquired Brain Injury Plan (PABI Plan), which creates a seamless, standardized, evidence-based system of care that is universally accessible for all children and young adults with a pediatric acquired brain injury regardless of where they live in the United States. Transitioning into an adult greater Independent Living.

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

It’s been over 20 years since my injury and there is not a day that goes by where I’m not haunted by my past experiences and wake up from a nightmare in a sweat, yelling and screaming. I can’t help but to be concerned about what the state is going to do to me next, all because I have a Traumatic Brain Injury. It’s bad enough the state took and wasted 5 years of my life by putting me in prison, all because I am disabled and they did not want to help me. But we are supposed to put our trust into them. How can you put your trust into a system that would rather lock you up and throw away the key then help the people who actually need it?

Example; 2012 I went back to the same town I grew up in and the same Fairfield Connecticut cops that harassed me because of my disability were still there. I returned to the Fairfield Police Department to pick up my records, and ran into one of my arresting officers. Maybe before they promote people to important jobs like Chief of Police, they should make them take a course in how to handle all situations such as disabilities as Traumatic Brain Injury. Talk about being clueless! Gary MacNamara, who is now the Chief of Police, who mind you, knows I have a brain injury, can make a stupid remark like this; “Are you still the same Craig who acts out?”

Signs and symptoms of neurological impairment caused by Traumatic Brain Injury depend on which structures in the brain are damaged. • Anxiety, nervousness • Behavioral changes • Difficulty controlling urges (disinhibition) • Impulsiveness • Inappropriate laughter • Irritability • Blurry or double vision (diplopia) • Depression • Difficulty concentrating or thinking • Difficulty finding words or understanding the speech of others (aphasia) • Difficulty swallowing (dysphagia) • Dizziness • Headache • Incoordination of movements • Lightheadedness • Loss of balance; difficulty walking or sitting • Loss of memory • Muscle stiffness and/or spasms • Seizures • Sleep difficulties (more or less sleep than pre-injury) • Slurred and/or slowed speech • Tingling, numbness, pain, or other sensations • Sense of spinning (vertigo) Weakness in one or more limbs, facial muscles, or on an entire side of the body
TBI… you don’t know unless you live it.

I used to dream about the future…Now I mostly just dream about what my life used to be, Nothing good ever lasts, for 11 years I was slowly regaining my Independence back with the right help and look how far I got now I’m back to square one. After reading my story below is self-explanatory.

ABI waiver 1- Brain Injury Model of Rehabilitation, should have been a role model for the rest of the country instead. 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.

In 2014. The State capped/closed ABI waiver 1 and has written a new Waiver with the intent to give preferential treatment to disabled people who save the state the most money and discriminate against members of a specific brain injury population who do not save the state money and are justifying it by calling it ABI waiver II. The fact is that the service descriptions and mental health bias of ABI Waiver II is taken from the current Mental Health Waiver and are inappropriate for Brain Injury Survivors. Mental Health Waiver services are supportive/maintenance models with rehabilitative components of services provided by staff at local Mental Health Associations.

This new Waiver is a HUGE step backwards for Brain Injury Survivors. This is a stigma for our community as brain injury survivors have fought long and hard to receive treatment specific to our needs and outside of the auspices of mental health treatment. Everyone with a brain injury is different and global interventions do not work with our population.

I recently had an assessment of adaptive behavior to see if I’m “still disable.” After 4 hours of several tests, I found out my T score was very high. My T scores showed that I was a lot worse than even my own doctor thought I was. For me it was really upsetting because I remember living my normal life before my brain injury. I had an American dream and I wanted to live that dream and I wanted to have a family. But after I had the accident my whole life changed, including all my dreams.

I now live a life to where I need to have staff help me do things or help me remember what I need to do throughout the day. Now every day of my life I wait for staff to show up and for their shift to end. I can’t begin to tell you how overwhelming this life is. I know the difference between right and wrong, but I am still treated like I’m crazy. I receive services that allows the state to take control and discriminate against me and my disability. Living day by day not knowing if I’m going to have the care I need. I live in fear everyday of being forced back into an institution of some sort because of this and then having it Justified Again by some arrogant state government worker.

For myself, I wish on that July afternoon that there was a National Pediatric Acquired Brain Injury Plan in place I wish that the states and doctors and nurses and all the cops judges and people whoever had the power over me had a clue about Traumatic Brain Injury. I wish that when I needed it there were people to turn too an answers to the questions I didn’t even know I had and the resources in place for me. If there had been such a plan in place, my life and my family’s lives would be completely different 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 sobering 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.

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The one thing one thing that can never be taken away from me is being a voice for all these forgotten children and families.

Wilton man, Craig Sears, leads effort to introduce national brain injury act

WASHINGTON, D.C. — One Wilton resident called it “Independence Day for brain injury survivors.”

Posted: Friday, July 22, 2011 12:00 am
By TOM EVANS Hour Staff Writer

Patrick Donohue, father of Sarah Jane — who was brutally shaken by a private nurse at 5 days old six years ago and is on the long road to recovery — said “today was an unbelievable day for millions of families across the country with a kid with a pediatric acquired brain injury.”

Sears and Donohue were two of the speakers on Wednesday at a press conference in the U.S. Capitol to announce the introduction of The National Pediatric Acquired Brain Injury (PABI) Plan Act, tabbed HR 2600.

U.S. Rep. Leonard Lance, R-N.J., the bill’s primary sponsor said the PABI Plan Act will make it easier for families across the nation to receive treatment for a condition with devastating consequences.

“The National Pediatric Acquired Brain Injury Plan is bipartisan legislation that seeks to develop a seamless, standardized, evidence-based system of care that is universally accessible for the millions of families who have a child or young adult suffering the leading cause of death and disability for American youth — brain injury.”

According to the Centers for Disease Control, more than 765,000 American youth age 25 and younger enter a hospital emergency room every year with a new traumatic brain injury. More than 80,000 are hospitalized, and over 11,000 of them die annually.

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

Donohue, who, since his daughter’s horrible treatment at the hands of a nurse who is currently serving 10 years in prison, has founded the Sarah Jane Brain Foundation and http://www.thebrainproject.org. believes the act provides a “unified system of treatment” for those suffering from brain injuries.

“This is an historic day for the millions of American youth who suffer from the number one leading cause of death and disability — brain injury — as well as their families,” Donohue said. “This bill, backed by Congressman Lance, Congressman Jim Himes (Connecticut, D-4), for whom we are very grateful he became an original sponsor, and others, would ensure families won’t have to reinvent the wheel when their child is impacted with a brain injury.”
Donohue also praised Sears — who suffered his traumatic brain injury 21 years when he was thrown from his motorcycle — for his persistence in pushing this issue to the highest levels of government.

“Craig has been an incredible advocate for traumatic brain injury,” Donohue said. “He’s been instrumental in speaking firsthand with people that can affect change. His experiences are not unique. Craig has been in meetings with congressional leaders, and he has been well-received. Craig deserves a lot of credit for this act. When we walked into the offices of congressmen, they knew what we were talking about because of Craig’s advocacy.”

“I call it our Independence Day for brain injury survivors, because I know first-hand what it is to lose my independence,” Sears said. “For myself and my family, I wish that on that July day (in 1990) that we had (the PABI Plan Act), so that the state, the cops, the judges — the people that had power over me — had the resources to deal with and know about my brain injury. So many people have slid through the cracks and ended up on the streets, in prison or on drugs. This is an historic day.”

Sears drew inspiration from Donohue as he watched the father take care of Sarah Jane the last three-plus years as they fought for this act side by side.
“To be very honest I’m at a loss for words,” Sears said. “Patrick is a role model for every parent in the world. He’s a prime example for every parent in the world. I’ve been traveling with him for the last three-and-a-half years, and I admire him like you wouldn’t believe. I can’t hope to wonder how different my life would be today if this act was in place 21 years ago.”

Also on hand Wednesday was Barbara Geiger-Parker, president and chief executive officer of the Brain Injury Association of New Jersey.

“This act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries,” Geiger-Parker said. “We applaud Congressman Lance and the other members of Congress for so-sponsoring this critically important, groundbreaking legislation.”

The PABI Plan Act would create a national network of 52 state Lead Centers of Excellence, one for every state, plus the District of Columbia and Puerto Rico, with the responsibility of implementing the PABI Plan on their own state’s unique demographics, geography, laws, infrastructure, financing, and causes of brain injury without duplicating current practices.

In addition, this legislation will focus on individuals with a “mild” traumatic brain injury, which accounts for 80 percent of brain injuries each year, commonly referred to as concussions, as well as rural communities, which make up 25 percent of the population and have higher incidence rates of brain injuries.
For example, the 52 state Lead Centers would help children suffering from sports-related injuries by providing additional information, resources and care. Donohue pointed out that the federal government spends less than $10 million a year on traumatic brain injuries — a fraction of what is invested in research for other illnesses and diseases with much lower incidence of occurrence.

Donohue was most impressed by the bipartisan sponsorship of the PABI Plan Act that included “some of the most conservative members of Congress to liberal icons.”

Among the nearly 50 co-sponsors were Reps. Tammy Baldwin, D-Wis., John Barrow, R-Ga., Marsha Blackburn, R-Tenn., Earl Blumenauer, D-Ore., Jo Bonner, R-Ala., Michael Burgess, R-Texas, Shelley Moore Capito, R-W.Va., Andre Carson, D-Ind., Gerald Connolly, D-Va., Marcia Fudge, D-Ohio, Barney Frank, D-Mass., Elton Gallegly, R-Calif., Raul Grijalva, D-Ariz., Michael Grimm, R-N.Y., Gregg Harper, R-Miss., Jesse Jackson Jr., D-Ill., Sheila Jackson Lee, D-Texas, Peter King, R-N.Y., Larry Kissell, D-N.C., Carolyn Maloney, R-N.Y., Jim McGovern, D-Mass., David McKinley, R-W.Va., Brad Miller, D-N.C., James Moran, D-Va., Donald Payne, D-N.J., Laura Richardson, D-Calif., Bobby Rush, D-Ill., Pete Sessions, R-Texas, and Patrick Tiberi, R-Ohio.

On Thursday, it was learned Connecticut Rep. John Larson, D-1, had also signed onto the bill.

Donohue will never forget seeing his baby girl, lying in the hospital with two broken collarbones, four broken ribs, and the loss of 60 percent of the rear cortex of her brain from the violent shaking of a woman he described as a “monster” as staff members tried to establish an intravenous tube in her arms and feet.

“Her mouth was wide open and tears were running down her face, yet she could not scream; she had no voice,” Donohue said. “I spoke on behalf of Sarah Jane today. My job is to be a voice for her. Today was an unbelievable day.”
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State and access agencies abusing their authority.

August 27, 2018

Craig Sears VS Department of Social Services<a

Re: recording your plan of care.

This is why having an audio recording is so very important. It seems more and more that the policies and regulations apply to us and not the Access Agencies and DSS…. It’s long overdue the state needs to stop abusing their authority, Start Recording every meeting (regardless of format or type) that you go into especially with the State and its Access Agencies.
SKM_224e18080710340
Of course they’re going to try to (intimidate) you by asking you questions, that’s simple to get around don’t give them the chance to ask! (Just record it and don’t tell them this is your right). As you can see in this letter above from the state there is no state or federal requirement to request to record! It also clearly states that there are no internal policies to request to record or that can stop you from recording so why would you allow them to use an internal policy to ask you questions? It will only hurt you in the long run.

Think about what this could do to help the brain injury community as well as the providers that are providing the services to us when the state makes cuts on somebody’s service plan without having a team meeting etc. and then leaving it up to the program provider to repay the state for the services they’ve already provided to the Survivor. Sec. 17b-260a-1G4: “the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Agency case manager assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.”

In my case I made a reasonable accommodation request under the Americans with Disabilities Act ADA and it was denied after filing a formal complaint with the commission on human rights and opportunities and the District of Connecticut, United States Attorney’s office. Now the state of Connecticut Department of Social Services is saying that they had no idea about the law/request and is justifying it with the letter above saying that it’s okay for us to record our meetings (Connecticut requires at least one party’s consent to record an in-person conversation) in other words the state is saying there’s a lot of laws they broke but it’s okay because they are the State of Connecticut Department of Social Services and they can get away with it because they are above the federal civil rights law for people with disabilities, all they have to do is justify it with a response, and send out a letter of one of the very laws that where violated saying you’re right I’m wrong.
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Rebuttal

To. CHRO

Re: Craig Sears vs. State of CT the State of Connecticut Department of Social Services

Please accept this rebuttal for what it is the truth. The State of Connecticut Department of Social Services (DSS) has a very amusing way of twisting the facts. We are told we have rights, but it seems to me that our rights are only put into place when it’s CONVENET to DSS and State Providers. As of April 16th, this was not my scheduled date for my reassessment meeting. The meeting was originally on March 6th, that’s when the scheduled date was. (It doesn’t take a rocket scientist to figure out that my rights were violated.) As it will become clear throughout this rebuttal and in my original complaint, Witnesses, emails, and hear it for yourself in the audio recording.

(I want to make it clear I am accusing the Department of Social Services and Access Agencies of breaking a lot more of the ABI waiver regulations/laws than what’s written in their Answer- denial. As you will see in this rebuttal letter, like I originally did when I reported it to CHRO and with the US attorney’s when I filed my complaint with them. You also have my Witnesses, an audio recording and my signed release of information on file get the reports and report it to the proper authorities. I want the state of Connecticut Department of Social Services and It’s Access Agencies Southwestern Connecticut Area Agency on Aging removed as a provider off the ABI waiver.

“From: Tariq Abdulaziz
Sent: Monday,
To: Craig Sears ; Marie Allen swcaa
Subject: Clarification

Mrs. Allen, I simply want to clarify the record. SWCAAA was informed of the recording prior to the assessment. Your internal policies do not supersede federal law. Kedeisha had the request in writing prior to the meeting. There is no state or federal requirement to request to record. The client sent a request as a courtesy. SWCAAA violated the clients’ rights on 3/6 when it refused to allow him to record. The violation of his rights resulted in his annual renewal being delayed.

Respectfully
Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC, CAC
President & Owner
Neurostrategies, Inc. “

Listen to the audio recording no one ever said that I was asking for a recording since December what it refers to is the questions that have about the universal assessment and that I have been requesting from the Department of Social Services (DSS) full disclosure on the Universal Assessment for individuals with brain injury – Who, What, Why, When, Where? Also regarding the Connecticut specific questions and the validity and reliability measures associated with the Connecticut specific questions. In addition, are Connecticut specific questions included in the consumers’ final results? Since December – It’s my right to know. (As of today date it is still not answered) see below

• Due to my disability I require a thorough preview of the assessment due to my disability (i.e., traumatic brain injury). In addition, it is my right to understand what is being administered. See numbers labeled 1 through 3 below and everything in between is what I’ve been asking for;

1. Please provide the following information related to Universal Assessment a. Title of the test b. Purpose c. Population for which the test is intended d. Publication date(s) e. Acronym used to identify the test f. Scores the test provides g. Whether the test is an individual or group test h. Forms, parts, and levels the test provides I. Whether the test has a manual j. Whether there is restricted test distribution k. foreign language and other special editions l. Time allowed examinees and total administration time m. Comments about the test (positive and negative comprehensive reviews) n. Test author(s) o. Test publisher p. Foreign adaptations of the test (if any) q. Subsisting’s (if any) of parts of the test that are separately available

2. Please provide any and all information related to standardization of the Universal Assessment with details related to normative data for “Connecticut specific questions” that are included in the assessment including but not limited to the following; a. The number and percentage of individuals with traumatic brain injury included in the normative sample (Connecticut specific questions). b. The number and percentage of individuals with acquired brain injury included in the normative sample (Connecticut specific questions). c. The number of individuals with frontal lobe injuries included in the normative sample (Connecticut specific questions). d. All quantitative and qualitative data (Connecticut specific questions). e. Provide any and all additional normative data (Connecticut specific questions). f. Please provide any and all reliability measures (Connecticut specific questions). g. Please provide any and all validity measures related to Connecticut specific questions h. Please provide any and all internal consistency measures (Connecticut specific questions). i. Please provide content and construct validity related to making predictions based on the results obtained (Connecticut specific questions). j. Any and all data related to gender, race, ethnicity and cultural groups related to Connecticut specific questions. k. Any and all data regarding assessment of individuals with limited to poor insight into their disability related to Connecticut specific questions.

3. Please provide any and all information related to standardization of the Universal Assessment including normative data for Universal Assessment excluding Connecticut specific questions. a. The number and percentage of individuals with traumatic brain injury included in the normative sample. b. The number and percentage of individuals with acquired brain injury included in the normative sample. c. The number of individuals with frontal lobe injuries included in the normative sample. d. All quantitative and qualitative data related to Universal Assessment minus Connecticut specific questions. e. Provide any and all additional normative data related to Universal Assessment minus Connecticut specific questions. f. Please provide any and all reliability measures related to Universal Assessment minus Connecticut specific questions. g. Please provide any and all validity measures related to Universal Assessment minus Connecticut specific questions. h. Please provide any and all internal consistency measures related to Universal Assessment minus Connecticut specific questions. i. Please provide content and construct validity related to making predictions based on the results from Universal Assessment minus Connecticut specific questions. j. Any and all data related to gender, race, ethnicity and cultural groups related to Universal Assessment minus Connecticut specific questions. k. Any and all data regarding assessment of individuals with limited to poor insight into their disability related to Universal Assessment minus Connecticut specific questions.

Like DSS Moreover, without admitting I don’t believe in answering a question with another question, it’s not an answer to a question. It’s just pure ignorance! Especially when my question answered their questions, as you will see in the reasonable accommodation request dated “February 15 ” address to Amy Dumont 55 Farmington Avenue Department of Social Services Hartford, Connecticut that both DSS and SWCAA emit to receiving in writing, emails and in the audio recording attached in this rebuttal.

As for my need a reasonable accommodation. I am a participant in the acquired brain injury ABI waiver and have a disability which impairs ability to adequately review results of the assessment without an audio-recording due to the following disability; Traumatic/Acquired Brain Injury. Refer to the reasonable accommodation request dated February 15, address to Amy Dumont 55 Farmington Avenue Department of Social Services Hartford, Connecticut. Attached

As for SWCAA not knowing about my request for a reasonable accommodation in my schedule date of my reassessment on March 6th meeting like it says in the response to my complaint as seen Below in the emails attached: Sent: Monday, May by Marie L. Allen, Executive Director of Southwestern CT Agency on Aging. Saying” SWCAA was unaware of your request to tape the March 6 reassessment until your care manager, Kedeisha was on site. SWCAA instructed Kedeisha to re-schedule so the Agency could confirm the digital media was HIPAA compliant and to allow our care manager to consider if she wanted to tape the meeting so that she would have an unedited copy as well.” Listen to the audio recording that I provided with this rebuttal Kedeisha clearly admits to receiving the email of the reasonable accommodation audio recording request that was sent to Amy Dumont @ DSS in February in the audio recording on March 6 see attached emails with response and reply. (Hence we have rights, but it seems to me that our rights are only put into place when it’s CONVENET to DSS and State Providers.)

Clearly SWCAA was informed of the recording prior to the assessment. As you will see in in the witness emails attached and hear it for yourself in the audio recording. There internal policies do not supersede federal law. Kedeisha had the request in writing prior to the meeting. There is no state or federal requirement to request to record. I sent a request as a courtesy. SWCAA violated my rights on March 6th when they refused to allow me to record then. The violation of my rights resulted in my annual renewal being delayed.

As for the threatening email that I received from SWCAA, you can see that in my original complaint below and in the emails to and from with the response attach with the laws that were violated. Including on top and below of it, keep in mind those laws like Sec. 17b-260a-1G4, Sec. 17b-260a-1I, & NEW Sec. 17b-260a-1J2c in ABI waiver Regulations they were put in place and supposed to protect me from this from this very thing. (Hence we have rights, but it seems to me that our rights are only put into place when it’s CONVENET to DSS and State Providers.)

In this rebuttal there are a series of emails & a DVD-R of the recording of the violation that DSS is referring to in their letter of denial. I informed everyone that the Assessment (regardless of format or type) was to be recorded. I informed everyone well in advance. There statement that SWCAA was not informed is incorrect as you will clearly see in the witness emails attached and hear it for yourself in the audio recording. That’s why they are on file with CHRO and called Witnesses – One is an ABI Waive Clinician – (doctor) the other is an ABI Waive independent living skills trainer both approved by allied. Please call on them.

I believe that Tariq Abdulaziz, Ph.D., M.S., M.S., MBA, LPC, LADC ABI Waive Clinician replies to the emails & his recorded voice speaking to DSS, SWCAA and his testimony to the US Attorney’s, located at Lafayette Circle, Bridgeport, Connecticut contradicts DSS denial/justification on all matters listen to the recording like Debra Drexler of CHRO did when I filed my complaint you would find out that it also contradicts DSS denial. See my original complaint that I handed to CHRO I am also providing a DVD-R of the recording of the violation please listen to Tariq Abdulaziz ABI Waive Clinician testimony in full. Also please refer to the emails address to and from dated and time-stamped. Along with my request for a reasonable accommodation audio recording address to Amy Dumont 55 Farmington Avenue Department of Social Services Hartford, Connecticut in the recording you’ll hear that Kedeisha Fountain, Specialized Care Manager SWCAA received the reasonable accommodation request but both the department of social services and SWCAA chose to violate my rights instead.

Southwestern Connecticut Area Agency on Aging

There’s no justifying your recording click here: https://youtu.be/nVfLh_RDqS4


Southwestern Connecticut Area Agency on Aging

May 14, 2018

Re: Southwestern Connecticut Area Agency on Aging (SWCAA) & the Department of Social Services (DSS)

My name is Craig Sears I am an independent man with a brain injury. I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver 1 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.

My civil rights were violated, American with Disabilities Act, discriminated against, and taken advantage of.

As a participant in the Acquired Brain Injury Waiver program I made a request for a reasonable accommodation (audio-recording) of my annual reassessment for purposes of effective communication due to my cognitive challenges. My request for use of an auxiliary aide (audio-recorder) was denied. I also chose to use my right not have people that do not know me and that are not part of my health care team, do my annual reassessment. That was also denied. Then Cindy Majersky (SWCAA) turned to intimidation to threaten to take my program away by reporting it to Department of Social Services (DSS) and stating that I was refusing to have the reassessment which is not true.

The problem that I have is the reassessment was postponed until April 16, 2018 which was out of the compliance for my yearly review. My annual reassessment was delayed and my program is out of compliance due to it being more than one years since a reassessment was conducted. These circumstances have placed my eligibility for the program at-risk. I need my services to be able to function on a daily basis and feel that this has not been taken into consideration. The annual reassessment was scheduled for March at my home; with the Care Manager (Kedeshia Fountain) from Southwestern Connecticut Area Agency on Aging (SWCAA) located at the following address; Southwestern Connecticut Area Agency on Aging 1000 Lafayette Boulevard Bridgeport, Connecticut 06604

Refused to participate if the reassessment was audio-recorded; Even after the ABI Waiver Clinician Tariq Abdulaziz told Kedeshia Fountain that the agency does not get to decide, Connecticut requires at least one party’s consent to record an in-person conversation and by not allowing me to record my assessment it was in violation of the Americans with Disabilities Act (ADA) the Clinician also told Kedeshia Fountain that other clients of his were recording their assessment. Kedeshia Fountain was then asked to contact her supervisor Cindy Majersky during the meeting and she agreed. The Care Manager reiterated her position that she would not participate in the meeting if I insisted on an audio-recording. That’s called discrimination. Listen to the DVD-R of the recording that I provided with this complaint 12 minutes 59 seconds long… a lot was said in that short time, Conn. Gen. Stat. §§ 53a-187, -89: “Connecticut requires at least one party’s consent to record an in-person conversation, and the consent of all parties to a telephonic conversation. In-person conversations: A person not present at a conversation must obtain the consent of at least one participant before any recording can take place under the state’s eavesdropping law.”

Then after Kedeshia Fountain & Cindy Majersky (SWCAA) refused to do my annual assessment, I later received an email from Kedeshia Fountain saying Good afternoon team, I wanted to inform you that I will be out of the office for about 2-3 weeks.  R/A is scheduled for 4/16 at 2pm will be done by another specialized Care manage with Cindy Majersky.  If you have any questions, please feel free to call or email her. My response was, Looks to me like my rights just keep getting violated – This is what I’m talking about it’s not a person centered program when it’s convenient and state or agency or driven one inconvenience completely unacceptable in my opinion. Sec. 17b-260a-1G4: “the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Agency case manager assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.” Then after I sent this reply back with the law specified I received this email from Cindy Majersky saying, I am Kedeisha’s supervisor and you and I have met in person and spoken on the phone on several occasions. We most recently spoken approximately two weeks ago when you requested paperwork from your file which I assisted in gathering for you. Unfortunately, Kedeisha is unable to be at the reassessment due to an unforeseeable event but her coworker, Karen, will be completing the paperwork and I wanted to be present as you and I had met in the past. My reply back was, Cindy If we have talked on the phone or if I have seen you in person it has nothing to do with the team meeting. Kedeisha is the one that made the meeting date not me. You and Karen are not part of my team and the law makes it very clear. I will not agree to my rights being violated! Then I received an email from Cindy Majersky saying, this meeting is for the purpose of completing your annual reassessment, not a team meeting. Please advise if you wish to complete the reassessment as schedule with Karen and myself. I will notify DSS if you are declining to complete the reassessment as scheduled. That is a threat that I CS take very seriously. Sec. 17b-260a-1I, states that “Individuals who are eligible for ABI services shall be given free choice of all qualified providers of each service included in his or her plan of care.”

If I didn’t allow them to “complete the reassessment as schedule with Karen and Cindy” that Cindy Majersky was going to notify DSS because they feel I am declining to complete the reassessment as schedule.  This is clearly not true. . I was all for the scheduled reassessment to happen. But as soon as I told them I was going to record my meeting, that’s when they broke the law! Cindy Majersky who has already violated my rights. But both Cindy and Karen are not part of my ABI waiver team and both of them I know nothing about and they know nothing about my injury or past.  Yet they are the ones that want to make input in to my program and services.  This is ridiculous and clearly is not in my best interest. When I stated this to Cindy Majersky she sent an email threatening me that if the meeting did not occur then my services would be affected…. I want to be clear that I have met my grocery store clerk several times in passing at the checkout line & I have talked to the pizza delivery person on the phone several times. … That does not give her or him the okay to do my or create my service plan of care without knowing me and understanding my needs. As you know each TBI is different which means that I am like no other and my needs are different than most. The ABI waiver is a person centered program and you can clearly see that this meeting was about their time sensitive schedule not mine…

I am still under protest of the April 16th meeting, when my annual reassessment/ team meeting took place with Karen O’Brien a new Care Manager from Southwest Area on Aging (SWCAA) where my rights were violated once again by (SWCAA).

Sec. 17b-260a-1J2c Responsibilities of the Agency, The Agency shall assign case manager staff to execute the following ABI responsibilities: implement the approved service plan and coordinate services provided to the individual under the waiver. Furthermore, Southwestern Connecticut Area Agency on Aging (SWCAA) has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan.

Instead of (SWCAA) doing the sensible thing and having my meeting rescheduled to date and time when Kedeshia could be there, Cindy Majersky would rather violate every law that was put in place to protect me. I Craig Sears request that Southwestern Connecticut Area Agency on Aging (SWCAA) (Be taken off my ABI waiver as an access agency I no longer feel safe having that Access Agency/Foundation on my ABI Waiver team. ‘I especially want Cindy Majersky having nothing to do with my (ABI) Waiver of any kind…’ The access agency/DSS has placed me, Craig Sears at risk of re-institutionalization, and placed my means of financial self-support, and the ability to meet my own basic needs at risk, and has neglected to support me in the least restricted environment available. Stricted environment available. It seems more and more that the policies and regulations apply to us and not the Access Agencies and DSS.

How can you keep putting your trust into a system that would rather take advantage of you and discriminate against you as an alternative to; in place of helping you?

When I go into an ABI meeting of any kind with the Department of Social Services or Access Agency I am not informed of my rights and my rights are not explained to me in full, especially with them knowing these certain sections in the law. Which might I add is not a multiple choice survey! So, they can’t be picked through and one by one eliminated. These Universal Assessments are put in place to protect us survivors and help us live as close to a normal life as we can. But when you ask DSS for a full disclosure (knowing, it’s required from DSS) regarding the use of your Universal Assessments and how it will be applied to me and/or how it will impact my Plan of Care as well as other brain injury survivors, DSS fails to do this.

As well as they fail to inform participants that they are allowed to record team meetings and annual assessments. As a brain injury survivor I have had to deal with these similar issues and unfortunately I still am going through them. So god only knows how many other people in a similar situation as me are going through the same thing. Having a brain injury is very difficult to live with because you have the constant reminder of having to work around other people and other “program providers”. Having to always worry about waking up the next day and having what little you have being taking from you in a blink of an eye. Or being told you can’t “record your meetings and/or Universal assessments because “THEY” don’t feel comfortable! Well it’s not about how they feel, it’s about me and all the other people in this world going through the same thing I’m dealing with when it comes to a Brain Injury. We are told we have rights, but it seems to me (as well as others) that our rights are only put into place when it’s CONVENET to DSS and State Providers.

Care Management agencies have an interest in the Plan of Care and are allowed to do Case Management. Their interest is tied to a payment they receive for the clients they serve in their region.  If a client moves from a region managed by care management agency “A” to a region covered by care management agency “B”, payment for the case is lost by care management agency “A” and care management agency “B” receives a payment.  This is a violation of the waiver as detailed below;

42 CFR §441.300 – 441.310 – Subpart G—Home and Community-Based Services: Waiver Requirements

(vi) Providers of HCBS for the individual, or those who have an interest in or are employed by a provider of HCBS for the individual must not provide case management or develop the person-centered service plan, except when the State demonstrates that the only willing and qualified entity to provide case management and/or develop person-centered service plans in a geographic area also provides HCBS. In these cases, the State must devise conflict of interest protections including separation of entity and provider functions within provider entities, which must be approved by CMS. Individuals must be provided with a clear and accessible alternative dispute resolution process.

I request; that the rule of law Concerning the Acquired Brain Injury Waiver 1 Program sections Sec. 17b-260a-1G4, Sec. 17b-260a-1I, Sec. 17b-260a-1J2c, including Conn. Gen. Stat. §§ 53a-187, -89: be enforced for myself and all brain injury survivors – I want all the Agency’s participants, conservators and providers made aware of these sections etc. in the law.

“(NEW) Sec. 17b-260a-11. Responsibilities of the individual”

Page 18 of 23

(a) Person-Centered Planning and Selecting Providers

(1) To the extent feasible, the individual shall lead the person-centered planning process. If the individual has a legal representative, the legal representative may participate in the planning process, making decisions for the individual, as necessary to ensure the best interests of the individual. The department may seek assistance from a court of probate if:

(A) The department determines that the legal representative is not acting in the best interests of the individual and is hindering the person-centered planning process; or

(B) There is a conflict between the individual and the legal representative. (2) The individual or the individual’s legal representative, or both, shall: (A) Choose the team to participate in the person-centered planning process; (B) Collaborate with the person-centered team;

(C) Select, from a list of providers, the providers who will deliver the services specified in the service plan;

(D) Supervise the services that are provided to the individual in accordance with the service plan; (E) Notify the department if a provider is not performing satisfactorily;
(F) Terminate the employment of a household employee or the services of a self-employed provider, as necessary; and
(G) Select new providers, as necessary.
(b) Financial Responsibilities (1) An individual whose gross income exceeds 200% of the federal poverty level shall be required to contribute toward the cost of services rendered under the waiver. The amount contributed shall be calculated according to section 5035 of the Uniform Policy Manual, or any other applicable law or policy of the department.

(2) The individual shall agree to pay directly to the department’s fiscal intermediary the portion of income calculated to be contributed to the individual’s cost of care. This agreement shall be documented in the individual’s service plan.

(c) Responsibilities of the Individual as the Employer of Household Employees

An individual who is the employer of household employees, as defined in section 17b-260a-3(24) of the Regulations of Connecticut State Agencies, shall be responsible for:

(1) Compliance with all applicable state and federal requirements, including, but not limited to, those related to workers’ compensation, unemployment compensation, minimum wage rates, and income tax withholding; and

(2) Hiring and termination of the employment of household employees, as necessary. (d) Critical Incident Reporting (1) The individual, or the individual’s legal representative, shall comply with the department’s critical incident reporting protocol for instances where an individual experiences a perceived or actual threat to the individual’s health or welfare, or to the individual’s ability to remain in the community.

** I want an open public forum held at the state capitol inviting all the Agency’s participants, conservators and providers in all person-centered programs that includes the elderly to be made aware of these sections in the law. So that I Craig Sears and other brain injury survivors don’t have their civil rights violated and aren’t discriminated against & taken advantage of like the Department of Social Services, Kedeshia Fountain & her supervisor Cindy Majersky from Southwestern Connecticut Area Agency on Aging (SWCAA) did to me.

I request from the Department of Social Services (DSS) – full disclosure on the Universal Assessment for individuals with brain injury – Who, What, Why, When, Where? also regarding the Connecticut specific questions and the validity and reliability measures associated with the Connecticut specific questions. In addition, are Connecticut specific questions included in the consumers’ final results? It’s my right to know. Again listen to the DVD-R of the recording that I provided with this complaint 12 minutes 59 seconds long… a lot was said in that short time. **

Below are all the emails going back and forth between myself my doctor/team and Southwestern Connecticut Area Agency on Aging (SWCAA) emails start from the bottom and work there the way up… All you have to do is look at Kedeshia Fountain first email to me/team it contradicts Cindy Majersky threatening email.
Cindy Majersky wrote:

Hi Craig,

This meeting is for the purpose of completing your annual reassessment, not a team meeting.  Please advise if you wish to complete the reassessment as schedule with Karen and myself.  I will notify DSS if you are declining to complete the reassessment as scheduled.

This change is out of our control and we do apologize for the change.

Best regards,

Cindy

Craig Sears wrote:

Cindy If we have talked on the phone if I have seen you in person it has nothing to do with the team meeting. Kedeisha is the one that made the meeting date not me. You and Karen are not part of my team and the law makes it very clear…. I will not agree to my rights being violated.

Sec. 17b-260a-1G4: “the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Department social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.”

Craig Sears

From: Cindy Majersky

To: Craig Sears Kedeish Fountan Tariq Adulaziz
Subject: RE: CS

Good morning Craig,

I am Kedeisha’s supervisor and you and I have met in person and spoken on the phone on several occasions.  We most recently spoken approximately two weeks ago when you requested paperwork from your file which I assisted in gathering for you.  Unfortunately, Kedeisha is unable to be at the reassessment due to an unforeseeable event but her coworker, Karen, will be completing the paperwork and I wanted to be present as you and I had met in the past.

Regards,

Cindy

From: Craig Sears
To: Kedeisha Fountain ‘Tariq Abdulaziz’; ‘Clement Pownall’
Cc: Cindy Majersky
Subject: RE: CS

Looks to me like my rights just keep getting violated – This is what I’m talking about it’s not a person centered program when it’s convenient and state or agency or driven one inconvenience completely unacceptable in my opinion. (See below)

Sec. 17b-260a-1G4: “the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Department social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.”

Dr. didn’t we talk about this to my last meeting I don’t even know this person Cindy

From: Kedeisha Fountain
To: ‘Kedeisha Fountain ‘Tariq Abdulaziz’; ‘Clement Pownall’
Cc: Cindy Majersky
Subject: CS

Good afternoon team,

I wanted to inform you that I will be out of the office for about 2-3 weeks.  R/A is scheduled for 4/16 at 2pm will be done by another specialized Care manage with Cindy Majersky.  If you have any questions, please feel free to call or email her.

Thank you,

Kedeisha Fountain, MS

Specialized Care Manager ABI

SW CT Agency On Aging

As you can see from below this is an ongoing problem when is this discrimination going to end?

See my Fair Hearing Statement for Craig Sears
Prepared by Jessica, Human Services Advocate PAIMI/PATBI
Office of Protection and Advocacy for Persons with Disabilities

When you file a civil rights complaint/violation you will get a lot of B.S. and a lot of justification and this is why having a recording is so very important there’s not going to be any justifying it. I’m posting this online so (SWCAA) & the Department of Social Services (DSS) can’t say that they weren’t aware, as your reading this BS justification below it will become made clearer why I say this. Start from the bottom and work your way up

From Craig Sears

To Tariq Abdulaziz

Dr Abdulaziz. just to let you know I got a phone call from Deborah @ (SWCAA) today asking to talk to me I was not home but I called her back and I ask her why she was calling me when she’s not part of my team! She asked me how my program was and I let her know!

I also gave a rundown of the laws that she did not want to hear and I told her that I won’t (SWCAA) gone off my team! I don’t want them anymore on my program it is threatened by them? (SWCAA)  being part of my ABI program.  She ask to talk to my staff I told her No number one that’s another violation she has no right to talk to anybody concerning my program or me; but I wanted to play it safe so I talked to Stephanie about it and then I had her call her back and Steph got no answer. I will talk to you later on this evening about tomorrow but I know that I do not want staff or anyone talking to (SWCAA).

Craig Sears

—————-

SWCAAA B.S justification

To: Tariq Abdulaziz; Marie Allen Cc: Roderick.Bremby DSS; CT Brain Injury Support Network

I’ve noticed that not everybody originally cc’d on this is getting a reply so I’m sending it off again with every email and reply.

(Start from the bottom and work your way up.) Craig Sears

—————-

To: Tariq Abdulaziz; Marie Allen Cc: Roderick.Bremby DSS; CT Brain Injury Support Network

Look it’s all in the recording SWCAA/DSS was aware of this recording weeks if not months before the recording there’s no justifying it… I do not accept your justification SWCAA/DSS violated my rights! Craig Sears

From `Tariq Abdulaziz

To: Marie Allen; Craig Sears

Marie,

SWCAA was afforded an opportunity to implement its policies when CS gave you the courtesy of a request. Unfortunately, SWCAA failed to implement its policies. Instead SWCAA chose to violate the clients rights. The decision was made by Mrs. Marjesky to violate his rights. We had a discussion with a U. S. Attorney and there was no concern raised regarding our recording a face to face meeting given that we were participants in the meeting.

Respectfully

Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC, CAC

President & Owner

Neurostrategies, Inc.

Marie Allen wrote:

Tariq,

I believe the Agency has the right to an interactive discussion with the client to ensure the audio recording will unedited and safeguarded for PHI.  I see no written request in the client’s file prior to 3/6- regardless, the client’s reassessment was completed timely on 3/26 which I assume included a recording.

Best regards,

Marie L. Allen, Executive Director

 

 


From: Tariq Abdulaziz 

To: Craig Sears; Marie Allen
Subject: Clarification

Mrs. Allen, I simply want to clarify the record.  SWCAA was informed of the recording prior to the assessment. Your internal policies do not supersede federal law. Kedeisha had the request in writing prior to the meeting. There is no state or federal requirement to request to record. The client sent a request as a courtesy.  SWCAA violated the clients rights on 3/6 when it refused to allow him to record. The violation of his rights resulted in his annual renewal being delayed.

Respectfully

Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC, CAC

President & Owner

Neurostrategies, Inc.

To: Craig Sears; mallen@swcaa; Amy McKenna

Mrs. Allen,

Are you aware that what transpired on 3/6/18 was audio-recorded?

Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC

President & Owner

Neurostrategies, Inc.

Craig Sears wrote:

check your dates Number 1 your justification is incorrect on all accounts  everyone was notified in advance so was DSS. As for Kedeshia being out on medical leave and return to the office today (ha ha) last week when staff and I went to see the US District Attorney Kedeshia Fountain and Stephanie said hello in  the restaurant in your office building so please put that BS justification somewhere else. Craig Sears

From: tariq.abdulaziz
Subject: Fwd: RE: Reasonable Accommodation Audio Recording

Mrs. Allen,

Please tell me how SWCAA internal policy supersedes American with Disabilities Act? ADA does not limit who can make such requests If your internal policies supersede federal regulations in this area please provide the policy.

Thank you,

Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC

President & Owner

Neurostrategies, Inc.

———- Forwarded message ———-
From: Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC
Subject: Fwd: RE: Reasonable Accommodation Audio Recording
To: tariq.abdulaziz
Cc:

—– Forwarded message from “Marie Allen”

Subject: RE: Reasonable Accommodation Audio Recording
To: “Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC., CAC”

Tariq,

SWCAA’s internal policies require requests of this nature to come from either the client, conservator or POA.  This internal policy is meant to protect the rights of the client.  Now that we have the client’s request documented, we will proceed without issue in regard to his request as we did in his 3/26/18 assessment.

Best regards,

Marie L. Allen, Executive Director

From: Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC., CAC]
To: Marie Allen
Subject: Reasonable Accommodation Audio Recording

Mrs. Allen,

Please note that Kedeshia Fountain and DSS previously informed Craig Sears that the assessment on 3/6/2018 would be a Universal Assessment.

Mr. Sears informed everyone that the Assessment (regardless of format or type) was to be recorded.  He informed everyone well in advance.  Your statement that SWCAA was not informed is incorrect.

Respectfully,

Office of NeuroStrategies and
Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC
President and Director
NeuroStrategies, Inc.

To: Tariq Abdulaziz; mallen@swcaa

I agree 100% with the doctor Craig Sears

From: Tariq Abdulaziz
To: Craig Sears; mallen@swcaa

Subject: Clarification

Mrs. Allen,

I simply want to clarify the record. SWCAA was informed of the recording prior to the assessment. Your internal policies do not supersede federal law. Kedeisha had the request in writing prior to the meeting. There is no state or federal requirement to request to record. The client sent a request as a courtesy. SWCAA violated the clients rights on 3/6 when it refused to allow him to record. The violation of his rights resulted in his annual renewal being delayed.

Respectfully

Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC

President & Owner

Neurostrategies, Inc.

To: Craig Sears; mallen@swcaa

Mrs. Allen,

I simply want to clarify the record. SWCAA was informed of the recording prior to the assessment. Your internal policies do not supersede federal law. Kedeisha had the request in writing prior to the meeting. There is no state or federal requirement to request to record. The client sent a request as a courtesy.

SWCAA violated the clients rights on 3/6 when it refused to allow him to record.

The violation of his rights resulted in his annual renewal being delayed.

Respectfully

Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC

President & Owner

Neurostrategies, Inc.

To tariq.abdulaziz; mallen@swcaa; Amy McKenna

I almost forgot all this BS justification doesn’t change the fact that my civil rights were violated, American with Disabilities Act, discriminated against, and taken taking advantage of manipulated and threatened – Re: Southwestern Connecticut Area Agency on Aging (SWCAA) & the Department of Social Services (DSS)

From: tariq.abdulaziz
To: mallen@swcaa
Subject: Fwd: RE: Reasonable Accommodation Audio Recording

Mrs. Allen,

Please tell me how SWCAA internal policy supersedes American with Disabilities Act? ADA does not limit who can make such requests If your internal policies supersede federal regulations in this area please provide the policy.

Thank you,

Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC

President & Owner

Neurostrategies, Inc.

———- Forwarded message ———-
From: Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC<amy.mckenna@neurostrategies.info
Subject: Fwd: RE: Reasonable Accommodation Audio Recording
To: tariq.abdulaziz

—– Forwarded message from "Marie Allen"
Subject: RE: Reasonable Accommodation Audio Recording
To: "Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC., CAC"

Tariq,

SWCAA’s internal policies require requests of this nature to come from either the client, conservator or POA. This internal policy is meant to protect the rights of the client.  Now that we have the client’s request documented, we will proceed without issue in regard to his request as we did in his 3/26/18 assessment.

Best regards,

Marie L. Allen, Executive Director

Southwestern CT Agency on Aging

From: Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC., CAC
To: Marie Allen
Subject: Reasonable Accommodation Audio Recording

Mrs. Allen,

Please note that Kedeshia Fountain and DSS previously informed Craig Sears that the assessment on 3/6/2018 would be a Universal Assessment.

Mr. Sears informed everyone that the Assessment (regardless of format or type) was to be recorded.  He informed everyone well in advance.  Your statement that SWCAA was not informed is incorrect.

Respectfully,

Office of NeuroStrategies and
Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC
President and Director
NeuroStrategies, Inc.

To: tariq.abdulaziz Amy McKenna

check your dates Number 1 your justification is incorrect on all accounts  everyone was notified in advance so was DSS. As for Kedeshia being out on medical leave and return to the office today (ha ha) last week when staff and I went to see the US District Attorney Kedeshia Fountain and Stephanie said hello in  the restaurant in your office building so please put that BS justification somewhere else. Craig Sears

From: Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC
Subject: Fwd: RE: Reasonable Accommodation Audio Recording

Mrs. Allen,

Please tell me how SWCAA internal policy supersedes American with Disabilities Act?

ADA does not limit who can make such requests

If your internal policies supersede federal regulations in this area please provide the policy.

Thank you,

Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC

President & Owner

Neurostrategies, Inc.

———- Forwarded message ———-
From: Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC.,
Subject: Fwd: RE: Reasonable Accommodation Audio Recording

—– Forwarded message from “Marie Allen”

Subject: RE: Reasonable Accommodation Audio Recording
To: “Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC., CAC”

Tariq,

SWCAA’s internal policies require requests of this nature to come from either the client, conservator or POA.  This internal policy is meant to protect the rights of the client.  Now that we have the client’s request documented, we will proceed without issue in regard to his request as we did in his 3/26/18 assessment.

Best regards,

Marie L. Allen, Executive Director

Mrs. Allen, Please tell me how SWCAA internal policy supersedes American with Disabilities Act? ADA does not limit who can make such requests If your internal policies supersede federal regulations in this area please provide the policy.

Thank you,

Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC

President & Owner

Neurostrategies, Inc.

———- Forwarded message ———-

From: Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC.,
Subject: Fwd: RE: Reasonable Accommodation Audio Recording

—– Forwarded message from “Marie Allen”
Subject: RE: Reasonable Accommodation Audio Recording
To: “Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC., CAC”

Tariq,

SWCAA’s internal policies require requests of this nature to come from either the client, conservator or POA.  This internal policy is meant to protect the rights of the client.  Now that we have the client’s request documented, we will proceed without issue in regard to his request as we did in his 3/26/18 assessment.

Best regards,

Marie L. Allen, Executive Director

From: Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA.,
To: Marie Allen
Subject: Reasonable Accommodation Audio Recording

Mrs. Allen,

Please note that Kedeshia Fountain and DSS previously informed Craig Sears that the assessment on 3/6/2018 would be a Universal Assessment.

Mr. Sears informed everyone that the Assessment (regardless of format or type) was to be recorded.  He informed everyone well in advance.  Your statement that SWCAAA was not informed is incorrect.

Respectfully,

Office of NeuroStrategies and
Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC

To:

Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC., CAC;

Tariq,

SWCAA’s internal policies require requests of this nature to come from either the client, conservator or POA.  This internal policy is meant to protect the rights of the client.  Now that we have the client’s request documented, we will proceed without issue in regard to his request as we did in his 3/26/18 assessment.

Best regards,

Marie L. Allen, Executive Director

From: Office of NeuroStrategies, Inc. and Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC.,
To: Marie Allen
Subject: Reasonable Accommodation Audio Recording

Mrs. Allen,

Please note that Kedeshia Fountain and DSS previously informed Craig Sears that the assessment on 3/6/2018 would be a Universal Assessment.

Mr. Sears informed everyone that the Assessment (regardless of format or type) was to be recorded.  He informed everyone well in advance.  Your statement that SWCAAA was not informed is incorrect.

Respectfully,

Office of NeuroStrategies and
Tariq Abdulaziz, Ph.D., M.S., M.S., MBA., LPC., LADC
President and Director
NeuroStrategies, Inc.

Hello Craig,

In response to your complaint:

 

  1. SWCAA was unaware of your request to tape the March 6 reassessment until your care manager, Kedeisha was on site.  SWCAA instructed Kedeisha to re-schedule so the Agency could confirm the digital media was HIPAA compliant and to allow our care manager to consider if she wanted to tape the meeting so that she would have an unedited copy as well.
  2. A follow up reassessment was offered for March 26, aligned with your reassessment month.  Tariq refused that date as he was unavailable.
  3. Kedeisha left for medical leave the next day and has just returned today.
  4. To provide seamless service and prevent any issues with your care plan, director Cindy Majersky called to request that you complete a reassessment visit with SWCAA Care Manager Karen O’Brien, LCSW.
  5. Your reassessment was completed on 4/16/18 and your plan of care and supports were not interrupted.
  6. SWCAA does not provide any HCBS except care management and therefore is in compliance with all CMS conflict-free care management requirements.

I understand your preference for maintaining the same team, unfortunately illness and absence of staff may make this impossible at times.  You are welcome to tape any/all meetings.

Thank you for the wonderful work you do advocating for the ABI community!

Best regards,

Marie L. Allen, Executive Director

———————————————————————————–

Mrs. Allen,

Response to your response request – complaint

Hello Craig,

In response to your complaint:

  1. SWCAA was unaware of your request to tape the March 6 reassessment until your care manager, Kedeisha was on site.  SWCAA instructed Kedeisha to re-schedule so the Agency could confirm the digital media was HIPAA compliant and to allow our care manager to consider if she wanted to tape the meeting so that she would have an unedited copy as well.

Every justification in your prior emails is nothing but BS including the dates of the occurrence

Please note that Kedeshia Fountain and DSS previously informed me CS that the assessment on 3/6/2018 would be a Universal Assessment.

I Craig Sears CS informed everyone that the Assessment (regardless of format or type) was to be recorded.  I informed everyone well in advance.  Your statement that SWCAAA was not informed is incorrect.

Mrs. Allen, I simply want to clarify the record.  SWCAA was informed of the recording prior to the assessment. Your internal policies do not supersede federal law. Kedeisha had the request in writing prior to the meeting. There is no state or federal requirement to request to record. The client sent a request as a courtesy. SWCAA violated my CS rights on 3/6 when it refused to allow me CS to record. The violation of my CS rights resulted in my annual renewal being delayed.

SWCAAA was afforded an opportunity to implement its policies when I CS gave you the courtesy of a request. Unfortunately, SWCAA failed to implement its policies. Instead SWCAA chose to violate my CS rights. The decision was made by Mrs. Marjesky to violate my CS rights. We had a discussion with a U. S. Attorney and there was no concern raised regarding our recording a face to face meeting given that we were participants in the meeting.

Look it’s all in the recording SWCAAA/DSS was aware of this recording weeks if not months before the recording there’s no justifying it… I do not accept your justification SWCAA/DSS violated my rights!

  1. SWCAA’s internal policies require requests of this nature to come from either the client, conservator or POA.  This internal policy is meant to protect the rights of the client.  Now that we have the client’s request documented, we will proceed without issue in regard to his request as we did in his 3/26/18 assessment.

Please tell me how SWCAA internal policy supersedes American with Disabilities Act?

I CS also ask my doctor to write up a request, ADA does not limit who can make such requests

If your internal policies supersede federal regulations in this area please provide the policy.

  1. A follow up reassessment was offered for March 26, aligned with your reassessment month.  Tariq refused that date as he was unavailable.

SWCAAA violated my CS rights on 3/6 when it refused to allow me CS to record.  The violation of my CS rights resulted in my annual renewal being delayed.

  1. Kedeisha left for medical leave the next day and has just returned today.

As for Kedeshia being out on medical leave and return to the office today (ha ha) according to you on 5-21-2018 when staff and I went to see the US District Attorney on 5-16-2018 Kedeshia Fountain and Stephanie said hello in  the restaurant in your office building so please put that BS justification somewhere else.

To provide seamless service and prevent any issues with your care plan, director Cindy Majersky called to request that you complete a reassessment visit with SWCAA Care Manager Karen O’Brien, LCSW.

  1. I never received a call from Cindy Majersky I received a threatening email
  2. Sec. 17b-260a-1I, states that “Individuals who are eligible for ABI services shall be given free choice of all qualified providers of each service included in his or her plan of care.”

3.4.5.6. Everything is in my original request complaint

As for #7. The US attorney’s CHRO my doctor and the law etc. can explain that better But See attach My program is paying for your services I have the right to fire you or do whatever I need to do under a person-centered program. Having your agency or any agency for case management etc. is not my choice that’s forced on me. It’s not a person-centered program when it’s convenient and state or agency driven when not convenient/ inconvenient completely unacceptable in my opinion. CS

I understand your preference for maintaining the same team, unfortunately illness and absence of staff may make this impossible at times.  You are welcome to tape any/all meetings.

> It seems more and more that the policies and regulations apply to us and not the Access Agencies and DSS…. Instead of (SWCAA) doing the sensible thing and having my meeting rescheduled to date and time when Kedeshia could be there, Cindy Majersky would rather violate every law that was put in place to protect me. See original request complaint below and attach.

Craig Sears

Top is in response to below

Hello Craig,

In response to your complaint:

  1. SWCAA was unaware of your request to tape the March 6 reassessment until your care manager, Kedeisha was on site.  SWCAA instructed Kedeisha to re-schedule so the Agency could confirm the digital media was HIPAA compliant and to allow our care manager to consider if she wanted to tape the meeting so that she would have an unedited copy as well.
  2. A follow up reassessment was offered for March 26, aligned with your reassessment month.  Tariq refused that date as he was unavailable.
  3. Kedeisha left for medical leave the next day and has just returned today.
  4. To provide seamless service and prevent any issues with your care plan, director Cindy Majersky called to request that you complete a reassessment visit with SWCAA Care Manager Karen O’Brien, LCSW.
  5. Your reassessment was completed on 4/16/18 and your plan of care and supports were not interrupted.
  6. SWCAA does not provide any HCBS except care management and therefore is in compliance with all CMS conflict-free care management requirements.

I understand your preference for maintaining the same team, unfortunately illness and absence of staff may make this impossible at times.  You are welcome to tape any/all meetings.

Thank you for the wonderful work you do advocating for the ABI community!

Best regards,

Marie L. Allen, Executive Director

Gotcha the power of recording Healthcare there’s no justifying this : https://youtu.be/nVfLh_RDqS4


Working Nationally To Standardize Treatment of Pediatric Acquired Brain Injuries

April 14, 2012

ImageMy Name is Craig Sears, I am a survivor of Traumatic Brain Injury this event changed each and every single aspect of my life, forever, For years, I felt as though no one else knew what I was going through, but believe me Traumatic Brain Injury survivors almost ALWAYS experience the same things. Going through the aftermath of my Traumatic Brain Injury, I teamed up with The Sarah Jane Brain Foundation to help promote the need for a National Pediatric Acquired Brain Injury plan, a proposed system of care that would be universally accessible for all children, and their families, regardless of where they live in the nation.

I’m writing to give you an update on HR 2600, the National Pediatric Acquired Brain Injury Plan Act (PABI Plan Act).

Pediatric Acquired Brain Injury (PABI) is the number one leading cause of death and disability in the United States, with more than 765,000 American youth entering a hospital every year with a new injury, resulting in over 80,000 hospitalizations and 11,000 deaths annually – and reports from the Centers for Disease Control and Prevention suggest that these numbers may even be underreported. HR 2600 – also known as the National Pediatric Acquired Brain Injury Plan (PABI Plan) Act – aims to streamline the system of care nationwide for the hundreds of thousands of American families faced with this issue every year, and the millions already living with its realities. Pediatric acquired brain injury includes not only traumatic events such as motor vehicle accidents, sports injuries, assaults, child abuse and falls, but also non-traumatic events such as strokes, brain tumors, pediatric AIDS, meningitis, infection and substance abuse. In addition, since pediatric acquired brain injury covers from birth to age 25, a number of our soldiers returning from conflicts in Iraq and Afghanistan are returning home with a life-altering traumatic brain injury. Surely we owe it to these brave young veterans to give them access to the best care possible after risking their lives to defend our country.

The National PABI Plan Act is currently supported by more than 110 Members of Congress, including Representatives James Himes and John Larson of Connecticut, and we hope to bring even greater attention to this issue not only locally, but also nationally by providing $2.9 billion in funding over the next seven years to help address PABI along the whole continuum of care, without adding a single cent to the national deficit, as all funds will be coming from the Department of Health and Human Services’ discretionary budget. These funds will finance improvements in prevention efforts, provide more accurate recognition of these injuries, help to standardize treatment in acute medical facilities nationwide, provide smooth reintegration back into the school system, assist with successful transition to adult life, as well as improve treatment in rural and exurban areas of the country with lesser access to emergency health care by establishing telehealth systems and a virtual center where families can correspond with medical professionals in order to receive the best medical care when visiting an emergency room simply isn’t an option.

Additionally, the National PABI Plan Act would establish “PABI centers of excellence” in each state (as well as Washington, DC and Puerto Rico) to facilitate this care from the moment of injury. Yale School of Medicine has already been selected as the State Lead Center for Connecticut, and it will have a regional leadership responsibility in the Adult Transition Category of Care, helping brain injury survivors transition into their adult lives. Upon passage, HR 2600 would provide the necessary funding to establish and build upon case management systems in every state and begin collecting the data across the continuum of care to create an evidence-based system of care.

This past March was National Brain Injury Awareness Month, and the Sarah Jane Brain Foundation celebrated the launch with a March 1st press conference in Washington, DC where Congressman Leonard Lance, HR 2600’s primary co-sponsor, joined co-sponsors Reps. Chaka Fattah (D-PA), Mike McIntyre (D-NC) and Patrick Meehan (R-PA) in providing remarks on the bill. Several supporting organizations (including the American College of Sports Medicine, Pop Warner Little Scholars, National Association of Athletic Trainers and WebMD, among others) also participated in the event. This was followed by a separate press conference on March 14th at the Rhode Island state house where Governor Lincoln Chaffee joined co-sponsors David Ciccilline and James Langevin from Rhode Island, as well as Patrick Donohue and his six-year-old daughter Sarah Jane the namesake of the Sarah Jane Brain Foundation, myself and Dr. Victor Pedro in announcing their support of HR 2600. Finally, on March 19th, the House Energy and Commerce Committee Subcommittee on Health held a hearing entitled “A Review of Efforts to Prevent and Treat Traumatic Brain Injury” to which we took Sarah Jane.

PABI is a public health crisis in this country, and it is time for our legislators to take action and pass the National PABI Plan Act during the first half of 2012. We hope that you will support and follow along with our efforts by visiting www.TheBrainProject.org as well as by writing letters to Congressmen James Himes and John Larson to thank them for their support of this very important piece of legislation.

Patrick Donohue is the Founder of the Sarah Jane Brain Foundation, which works to improve the system of care for those living with pediatric acquired brain injuries.

You can learn more about their efforts, as well as the National Pediatric Acquired Brain Injury Plan Act (HR 2600), by visiting www.TheBrainProject.org

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

 


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

March 25, 2012

March 25, 2012

To Whom It May Concern.

My name is Craig Sears, and I am a Survivor of a Traumatic Brain Injury.

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

My advocacy started as means to overcome my own difficulties. It’s become my mission to make sure that no one else has to go through what I have.

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

And in a heartbeat, it was all gone. Suddenly, I came up over a hill, and there was a car going the wrong way. It was too late. I couldn’t stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I landed head first into a curb.

I have no memory of the next 6 months. That period of time is a Black Hole in my life. I was in and out of a coma, undergoing multiple surgeries. The doctors operated on my head, and did what they could to patch up my body. This was the beginning of my physical recovery.

Though my body was healing, a bigger problem went untreated. And no one realized it.  Insult was added to injury. This is where I fell through the cracks. Despite having my head in a cast, no one identified the true nature of my injury me as being a Traumatic Brain injury (TBI). That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died.

My struggles were constant. I had to relearn everything, How to walk, how to talk, how to eat, how to use the bathroom. How to care for myself, and then there was the incessant pain, the physical pain of my body overcoming weakness and injury. Worse yet there was the anguish of not knowing who I was.

Things went from bad to worse. Soon, the treatment center I was in transferred me to a mental health ward. I spent the next 9-months locked in against my will, slowly regaining my memory, and a growing sense that this type of life wasn’t for me.

I was angry. I wanted out. I began calling out to anyone who would listen to me Town officials, State Government, anyone who could get me out. While I knew I didn’t need to be there, I did know that I needed help in other areas. But the help I needed wasn’t available. This was not a mental health issue.

Eventually, a sympathetic ear at the Connecticut Governor’s office helped arrange a meeting between my family, my doctors, and a state representative. I told them all, I wanted out, I needed out.

And it was clear to them that I was right. But where was I to go?

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

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

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

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

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

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

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

Everything I had long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often, ending up in shelters, local lockups, and numerous mental health facilities all over the state. I continued to spiral down, and soon I wound up homeless, and not long after that, in prison.

I had several brushes with the law. While I struggled daily to live with my brain injury, I ended up with several minor arrests for public urination and things of that sort. The state of Connecticut did find a way to use my injury against me. It was a probation violation, for which I would ultimately receive a five-year prison term. I spent five years locked up in a level-four high-security prison where I received absolutely no help for my disabilities. I was locked in an 8’x 10′ cell twenty-four hours a day surrounded by gang members, rapists, killers, and child molesters. All for peeing in a garage, does that sound like justice to you?

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

Somehow, I survived to be released in 2003. Life though continues to be a struggle. I have no friends. I have no money. I have few options, and fewer choices. I am very uncertain of my future. I still want the American Dream, but it feels further away than ever. I want to be hopeful, but I know all too well how quickly good can go bad in life. But I try my best to help those with Traumatic Brain Injury (TBI) get the help we need, and to avoid the mistakes, and missteps I made.

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

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

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

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

Again my personal experience with the constitution state

Due to my injury I have memory problems, speech problems, balance issues and many other things.  I am disabled because of this and receive services from the state, which enable me to remain in the community instead of in a nursing home, in prison or on the streets. However, the State of Connecticut wrongly took away those services, for no reason and without notice.

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

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

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

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

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

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

Fortunately I am a strong advocate for myself and after many phone calls, including to my local Congressman’s office, James Himes [D-CT4] I was able to have them reinstate my services – but not without cost to me as I went for so long without getting the services I needed.

It also brought to my attention the sad state of the system as it currently exists – it is designed to take advantage of people with disabilities. Another person with a Traumatic Brain Injury in my shoes would likely not have had the ability to advocate for him or herself as I did, and without services they would not have anybody else willing to do it on their behalf.  This is a very disturbing situation and it shows how easy it is for states to discriminate against and take advantage of someone like me – it’s like taking candy from a baby!

There is a national organization called the Sarah Jane Brain Foundation whose Advisory Board wrote a national plan (the National Pediatric Acquired Brain Injury Plan) which would help in situations such as mine. The plan calls for the development of 52 State Lead Centers of Excellence, which would, among other things, have case managers specially trained to assist children and young adults with brain injuries.

If the National PABI Plan was in place, that case manager would have stepped in during my crisis and been my advocate.  These people would be trained to help those who cannot help themselves.  Imagine what would have happened to someone else in my same shoes that did not know to contact the people that I contacted to get my services back!  They would have not gotten them reinstated and would have ended up on the streets, in prison or dead.

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

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

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

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

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

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

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

Quick Facts about PABI:

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

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

B) Non-trauma: strokes, brain tumors, meningitis, seizures, near-drowning, etc.

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

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

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

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

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

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

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

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

It’s been 24 years since my injury and there is not a day that goes by where I’m not haunted by my past experiences and wake up in a sweat, yelling and screaming. I can’t help but to be concerned about what the state is going to do to me next, all because I have a Traumatic Brain Injury TBI.

As a brain injury survivor, I know firsthand how awful it is to have lost my independence.  I live and work a program 24/7, I have taken the advice to try and better myself and every time I have, the system has found a way to bring me down and leave me with no room to grow. I understand the advice people have given me and I have used it and have worked it all into my life on more than one occasion. Every time I put the tools in my “tool-box” (or should I say brain) in an attempt to better myself, the system has found a way of pulling me back down.

My back is against the wall!

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

It’s bad enough trying to find anyone that knows anything about brain injury, I’ve been a participant in the Acquired Brain Injury (ABI) Waiver Program for several years in CT and I have YET to find anyone that I don’t need to tell what to do; Or anyone that does not talk down to me like I’m a 2 year old.

I have kept in this “box” where I’m very limited on what I can do.  I believe that my rehabilitation has been curtailed as a result.  I am frequently required to see a doctor or go into a state team meeting and prove that I am disabled.

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

“HAVE A HEART – SAVE A BRAIN”

For myself, I wish on that July afternoon that there were a national PAPI plan in place. I wish that the doctors, and nurses, and all the states, cops, judges, and people whoever had the power over me had a clue about TBI. I wish that when I needed it, there were people to turn to, answers to the questions I didn’t even know I had, and the resources in place for me. I wonder how different my life and my family’s lives would be today.

Patrick Donohue’s dedication to his daughter is beyond words, he is a true leader and role model for every single parent in the world.

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

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

Sincerely,

Craig Sears,

A Voice for Traumatic Brain Injury


The Sarah Jane Brain Foundation launches worldwide campaign for Brain Injury Awareness Month

February 23, 2012

The Sarah Jane Brain Foundation launches worldwide campaign for Brain Injury Awareness Month

We are launching a worldwide campaign, “Have A Heart – Save A Brain” during Brain Injury Awareness month beginning on March 1 in Washington, DC and then we are heading to Iran and all over the world (see details below).
Please encourage you…r friends to replace their Facebook profile picture during March with the attached logo “Have A Heart – Save A Brain” and join our cause.

Our first event will be Thursday, March 1 in DC with a special screening of Dr. Sanjay Gupta’s CNN documentary about concussions in high school football (http://tinyurl.com/GuptaScreening) and then we will be traveling to Mashad, Iran to particpate in an International Congress on Road Safety (http://www.razavihospital.com/Default.aspx?tabid=609&language=en-US). Brain injuries can be caused by trauma (motor vehicle crashes, sports concussions, child abuse, blast injury from war) or non-trauma (strokes, tumors, meningitis).

Please let us know if you would like to attend any of these events or would like to know of other events that are happening. Some FACTS ABOUT BRAIN INJURY:
Brain Injury is the #1 leading cause of death and disability for American youth
More than 765,000 American youth enter an Emergency Department each year with a new brain injury (comparing that to 56,000 new cases of HIV and 24,000 new cases of autism annually)
Every 40 seconds another American youth is sustaining a new brain injury
More than 80,000 American youth are hospitalized each year with a brain injury and over 11,000 die annually due to a brain injury
Upwards of 80% of the youth in Juvenile Detention Centers in America suffer from a brain injury yet most of these injuries are not diagnoses nor treated
HR 2600 is the largest national initiative dealing with brain injury in our country’s history ($2.9 Billion over the next seven years) and it has over 100 bi-partisan co-sponsors

All the best, Patrick

Patrick B. Donohue, Esq.
Founder, The Sarah Jane Brain Foundation
1501 Broadway – Suite 12099
New York, NY 10036
(212) 576-1180
www.TheBrainProject.org/lettertosarahjane.php (please read my letter to Sarah Jane when she turned five if you haven’t arleady done so)!

Details of some of the events taking place around the world:
Throughout the month of March, The Sarah Jane Brain Foundation will be traveling around the world, raising awareness about the #1 leading cause of death and disability for youth, brain injury. Below is a list of some of the events we will be participating in (other events will be announced throughout the month):

March 1: Capitol Hill, Washington, D.C.
Special screening of CNN’s Dr. Sanjay Gupta Reports’ documentary “Big Hits, Broken Dreams” about youth sports concussions in high school football, followed by a panel of SJBF International Advisory Board Members of former athletes and experts about the latest prevention, identification and treatment of concussions in youth sports.

March 8-9: Razavi Hospital, Mashad, Iran
The 1st International Congress on Road Safety aims to increase and spread scientific knowledge about reducing traffic crashes, injuries and fatalities. A team of SJBF International Advisory Board Members will be presenting at this conference.

March 14: Providence, Rhode Island
Press conference with Governor Lincoln Chafee, Congressmen James Langevin and David Cicilline, local officials and SJBF International Advisory Board Members discussing the broad-based bi-partisan support for HR 2600, the federal legislation with 100+ Members of Congress who are co-sponsoring that will fund a $2.9 Billion, seven-year national initiative to implement the National Pediatric Acquired Brain Injury Plan (PABI Plan)

March 21-25: Edinburgh, Scotland
A team of SJBF International Advisory Board Members will attend and participate in The Ninth International Brain Injury Association World Congress


A single voice is often unheard but a thousand voices can shake the world.

November 20, 2011

I wanted to provide everyone with a quick update on HR2600, The National Pediatric Acquired Brain Injury Plan Act (PABI Plan Act) that will fund a $2.9 Billion, seven-year federal initiative to implement the PABI Plan.  As of this week we have over 100 bi-partisan co-sponsors

Below is a list of the co-sponsors as of November 18, 2011. If you don’t see your Member of Congress please Email: ted@TheBrainProject.org : the name he will email you the name/phone of the staff person to call & leave a 30-second message encouraging them to be a co-sponsor of the PABI Plan Act

Some of the highlights of the support the PABI Plan Act (HR 2600) has generated include:

  • The most conservative Member of the House, Rep. Mike Pence (R-IN) and the most liberal Member of the House, Rep. Tammy Baldwin (D-WI)
  • Five Republican Committee Chairs: Reps. Buck McKeon (R-CA, Chair-Armed Services), Peter King (R-NY, Chair-Homeland Security), Spencer Bachus (R-AL, Chair-Financial Services), Ralph Hall (R-TX, Chair-Science) and Jo Bonner (R-AL, Chair-Ethics) as well as six Ranking Democrats: Reps. Barney Frank (D-MA, Ranking-Financial Services), Howard Berman (D-CA, Ranking-Foreign Affairs), Bob Brady (D-PA, Ranking-Administration), Ed Markey (D-MA, Ranking-Natural Resources), Nick Rahall (D-WV, Ranking-Transportation) and Eddie Bernice Johnson (D-TX, Ranking-Science)
  • The Chair of the National Republican Congressional Committee, Rep. Pete Sessions (R-TX) and the Chair of the Democratic Congressional Campaign Committee, Rep. Steve Israel (D-NY)
  • Broad-based, bi-partisan support in the Energy and Commerce Committee: Reps. Michael Burgess (R-TX), Marsha Blackburn (R-TN), Bob Latta (R-OH), Cathy McMorris-Rodgers (R-WA), Gregg Harper (R-MS), Leonard Lance (R-NJ), David McKinley (R-WV), Brian Bilbray (R-CA), Adam Kinzinger (R-IL) and Reps. Edolphus Towns (D-NY), Bobby Rush (D-IL), Michael Doyle (D-PA), Tammy Baldwin (D-WI), Mike Ross (D-AR), John Barrow (D-GA), Ed Markey (D-MA)
  • GOP Freshmen Members: Reps. Blake Farenthold (R-TX), Stephen Fincher (R-TN), Mike Fitzpatrick (R-PA), Tim Griffin (R-AR), Michael Grimm (R-NY), Frank Guinta (R-NH), Nan Hayworth (R-NY), Joe Heck (R-NV), Bill Johnson (R-OH), Adam Kinzinger (R-IL), David McKinley (R-WV), Patrick Meehan (R-PA), Jon Runyan (R-NJ), Steven Palazzo (R-MS), Allen West (R-FL) 

Co-sponsors of HR2600 as of November 18, 2011: Baca, Joseph N. “Joe” [CA-43], Bachus, Spencer [AL-6], Baldwin, Tammy [WI-2], Barrow, John [GA-12], Berman, Howard [CA-28], Bilbray, Brian [CA-50], Bishop, Sanford [GA-2], Blackburn, Marsha [TN-7], Blumenauer, Earl [OR-3], Bonner, Jo [AL-1], Brady, Robert A. [PA-1], Brown, Corrine [FL-3], Burgess, Michael C. [TX-26], Burton, Dan [IN-5], Capito, Shelley Moore [WV-2], Carnahan, Russ [MO-3], Carson, Andre [IN-7], Clarke, Hansen [MI-13], Connolly, Gerald E. “Gerry” [VA-11], Crenshaw, Ander [FL-4], Davis, Danny K. [IL-7], Diaz-Balart, Mario [FL-21], Doyle, Michael F. [PA-14], Farenthold, Blake [TX-27], Fincher, Stephen [TN-8], Fitzpatrick, Mike [PA-8], Frank, Barney [MA-4], Fudge, Marcia L. [OH-11], Gallegly, Elton [CA-24], Green, Al [TX-9], Griffin, Tim [AR-2], Grijalva, Raul M. [AZ-7], Grimm, Michael G. [NY-13], Guinta, Frank [NH-1], Hall, Ralph [TX-4], Harper, Gregg [MS-3], Hayworth, Nan A.S. [NY-19], Heck, Joseph J. [NV-3], Heinrich, Martin [NM-1], Himes, James A. [CT-4], Israel, Steve [NY-2], Jackson Lee, Sheila [TX-18], Jackson, Jesse L., Jr. [IL-2], Johnson, Bill [OH-6], Johnson, Eddie Bernice [TX-30], Johnson, Hank [GA-4], Jones, Walter [NC-3], Kildee, Dale E. [MI-5], King, Peter T. [NY-3], Kinzinger, Adam [IL-11], Kissell, Larry [NC-8], Langevin, Jim [RI-2], Larson, John B. [CT-1], Latham, Thomas “Tom” [IA-4], Latta, Robert [OH-5], Lewis, John [GA-5], Loebsack, David [IA-2], Maloney, Carolyn B. [NY-14], Markey, Ed [MA-7], McCotter, Thad [MI-11], McGovern, James P. [MA-3], McIntyre, Mike [NC-7], McKeon, Howard P. “Buck” [CA-25], McKinley, David B. [WV-1], McMorris Rodgers, Cathy [WA-5], Meehan, Patrick [PA-7], Michaud, Michael [ME-2], Miller, Brad [NC-13], Moran, James P. [VA-8], Norton, Eleanor Holmes [DC], Palazzo, Steven M. [MS-4], Payne, Donald M. [NJ-10], Pence, Mike [IN-6], Rahall, Nick [WV-3], Rangel, Charles B. [NY-15], Reed, Tom [NY-29], Richardson, Laura [CA-37], Rivera, David [FL-25], Ross, Mike [AR-4], Runyan, Jon [NJ-3], Rush, Bobby L. [IL-1], Ryan, Tim [OH-17], Schiff, Adam B. [CA-29], Schmidt, Jean [OH-2], Schock, Aaron [IL-18], Sessions, Pete [TX-32], Sires, Albio [NJ-13], Stivers, Steve [OH-15], Thompson, Glenn [PA-5], Tiberi, Patrick J. [OH-12], Tierney, John [MA-6], Tonko, Paul [NY-21], Towns, Ed [NY-10], Tsongas, Niki [MA-5], Turner, Robert L. [NY-9], Walz, Timothy [MN-1], West, Allen [FL-22], Yarmuth, John A. [KY-3], Young, Don [AK]; Primary Sponsor: Lance, Leonard [NJ-7]

Craig Sears

The Sarah Jane Brain Foundation

International Advisory Board

339 5th Avenue-Suite405

New York,NY10016

212.576.1180                  

www.TheBrainProject.org