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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 US to take advantage of someone like me. 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".

This is my story.

It was a beautiful summer afternoon. I was out riding 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. 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 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 hard to make it. I would have given up, lay down and died. My struggles were constant, and I had to relearn everything. How to walk, how to talk, how to eat, how to use the bathroom; How to care for myself, and then there was the incessant pain, the physical pain of my body overcoming weakness and injury. Worse yet, there was the anguish of not knowing who I was. 

Things went from bad to worse. Soon, the treatment center I was in transferred me to a Psychiatric Hospital. I spent the next 9 months locked in against my will, slowly regaining my memory. I was angry and I wanted out. I would sit by the phone for hours trying to figure out how to make a call out. I finally figured it out and began calling out to anyone who would listen to me - Town officials, State Government anyone who could get me out. While I knew I didn't need to be there, I did know that I needed help in other areas. But the help I needed wasn't available. This was not a mental health issue. 

Eventually, a sympathetic ear at the Connecticut Governor's office helped arrange a meeting between my family, my doctors, and a state representative. I told them all, I wanted out and I needed out and it was clear to them that I was right. But where was I to go, I had only one real option and that was my family. Yet I didn't want to be a burden to my parents. I applied for Section 8 housing, and was put on a waiting list. I was turned down repeatedly. So in the meantime, my family helped me get into my own one room efficiency apartment. While a big step up from the psychiatric ward, this too, was far from ideal. I now found myself living alone, except for the roaches and rats, and vulnerable, in an area known for drug dealers and prostitutes. I wandered those mean streets, trying to regain some kind of memory. I would watch other people to see what they were doing, how they were acting in order to regain anything that I knew how to do before the accident. All I could figure out at this time was that this was not who I was. 

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

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

One of the lasting consequences of my Traumatic Brain Injury was that I would slur my words when I spoke and my balance would be off when I walked. Instead of realizing that this is how I am, people just assumed that I was drinking or using drugs. No one would take me seriously. It became harder and harder to find where I fit in.

While I was struggling daily to live with my brain injury, I ended up with several minor arrests for public urination and things of that nature. This resulted in me constantly be thrown into Psychiatric hospitals. After being 4 point restrained and forcefully drugged multiple times and having other patients spitting, urinating, throwing feces at me, and watching them have full blown conversations with themselves, I realized that this type of life wasn't for me. It was like a stay in "One Flew over the Cuckoo's Nest." It was cruel and unusual punishment, no one should be treated the way they treated me.Due to lack of services for TBI sufferers, I became homeless. 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 metro north police officer that was patrolling the area with his dog. When I spotted him I zipped up my pants and started walking away. When he saw me he let the dog loose. I was severely attacked and had to go to the hospital to be treated for my injuries. When I was released from the hospital I was placed in police custody and informed that I was under arrest for attempted attack on a peace officer because my leg moved when the police dog was attacking me. They accused me of trying to kick the dog. I knew this was crap because I was the one taken to the hospital, not the dog. But the following day I was brought to court. I never saw an attorney; they just continued my case and sent me to the Correctional Center for two weeks. I returned to court, this went on for about three months and from there I was transferred to a 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 in 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 Psychiatric hospitals all over the state. I continued on my downward spiral and soon I wound up homeless; and not long after that in prison.I was put in prison for Violation of probation. 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 the State 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 that I was going to the Connecticut Valley hospital to a brain injury unit but before this happened I needed to see a judge. Yes, they all knew I had a brain injury and how I needed help, but they chose not to. When I was brought upstairs to the courtroom it was closed off for a private hearing. Someone from the state office of Protection and Advocacy for Persons with Disabilities, a doctor and my mother were there waiting. We were all told I was going to the hospital into a TBI unit, but needed to see the judge first. The Superior court judge Never heard anyone's statement, he opened my file and closed it and said he was sentencing me to the department of Corrections because they have one of the best mental health systems in the state. Keep in mind this is not a mental illness it is an injury. I'm still on NO medication and I never saw any shrinks, in or out of jail and I'm NOT mentally ill and when I was put into prison I was put into general population. This time the court gave me 5 years V.O.P. 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 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.During my incarcerations, I suffered many indignities and witnessed atrocities. I spent 5 years locked up 23 1/2 hours a day. Only allowed out to shower and make a phone call. I was sent to the medical ward and stripped absolutely naked and left there for days/weeks at a time. I have witnessed murders and rapes. There were nights I would be yelling and screaming in my sleep. Only to be woken up by the CO and put back into a strip cell. Words cannot express the horror of it all. All during a five year prison sentence. Five years that I spent every minute enduring one indignity or another.One day I started to realize that a lot of my things were going missing. When I realized my cellie was stealing from me, I let the Correctional Officer (CO) know during wreck what was going on and I asked for a cell change. I can only imagine that the CO said something to him because after wreck, my cellie attacked me in my cell. After every wreck they do a count and when the CO came by my cell he saw us on the floor fighting. Next thing I knew there were CO's pulling us off one another and putting us in handcuffs and shackles and dragging us off to the AD/SEG for 2 weeks. From there I was sent back to my cell and was put on CTQ for the next 30 days, and I lost all my property (everything) - CTQ is Confinement to Quarters 23 hours a day lockdown, were you can only come out of your cell for a shower, in reality it's 15min. and ASU is Administrative Segregation Unit also known as AD/SEG or the hole. I guess the difference between the two is that if an inmate receives CTQ as a disciplinary action the inmate stays in his same house (cell) but it confined to that area. Where if he was doing AD/SEG time he is in a totally different housing unit; Things like this were always happening to me.

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

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

They say are opinion matters

Re: Public Hearing & Meeting on Proposed Amendments to the Acquired Brain Injury Medicaid Waivers

I am a brain injury survivor receiving services from the ABI Waiver 1 program. It is easy to confuse me and upset me, so I am ask that everyone remember I do have a brain injury, you can't see my injury, but it is there.

I can't believe they say our opinion matters but yet we only have 3 minutes to talk, fact No one is looking at the bigger picture!

In 2014 - 2016 the community made the State and all of the policy makers very much aware that ABI waiver II was a mistake and will not work for brain injury survivors! But yet we are here today because DSS is making changes to ABI waiver one (a brain injury rehabilitative model) trying to make it just like ABI waiver II a mental health model.

God knows I can relate;

Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized.

In 1990 the state department of mental health was being sued by 25 brain injury victims who were placed in psychiatric hospitals because there was nowhere else to put them and no services or programs for them. As you know Yes I was one of the victims. Every change DSS has made has hurt me so much that I had to get Office of Protection and Advocacy for Persons with Disabilities (OPA) involved in my ABI program, that's why I'm speaking up; If these changes are hurting me think about the other 450 people on the waiver and what it's doing to them. Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized.

Click here: http://www.clearinghouse.net/detail.php?id=439&search=

My life today fact: 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.

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. How can you keep putting your trust into a system that would rather lock you up and throw away the key then help the people who actually need it?

If our opinion really mattered we would not be here today fighting for the same issue(s) we have been fighting for since the beginning.

I encourage all legislators to please ask me questions on this issue so I could better school you on the importance of this matter!


Re: ABI Waiver Advisory Committee

This is a sorry excuse for an advisory board and no one is looking at the bigger picture! The advisory board and Connecticut Department of Social Services (herein referred to as DSS) had the nerve to say that our "opinion counts", but then they cut me off 1/4 of the way into my speech! How is it that our "opinion counts" when we are continually cut off and shut out? They only want to hear what is convent for them but when the facts are right in front of them they shut us out but still have the balls to say our opinion matters. I understand to a point where maybe us brain injury survivors tend to go off topic as to what they are looking for but DSS as well as all policy makers have to understand that these points we address are meaningful to us and our lives.

In 2014 - 2016 the community made the State and all of the policy makers very much aware that the ABI waiver II was a mistake and will not work for brain injury survivors! Now DSS is making changes to ABI waiver one (a brain injury rehabilitative model) trying to make it just like ABI waiver II a mental health model. Speaking for myself and the rest of the brain injury community we don't want that!

They tend to forget how hard it is to live in a community where we have to look every which way because we are not aware of what might happen and if we will wake up the next day to a program that helps us live our lives as normal as we can.

Every change DSS has made has hurt me so much that I had to get Office of Protection and Advocacy for Persons with Disabilities (OPA) involved in my ABI program, that's why I'm speaking up; If these changes are hurting me think about the other 450 people on the waiver and what it's doing to them. (see below)

I am a brain injury survivor receiving services from the ABI Waiver, It is easy to confuse me and upset me, so I am ask that everyone remember I do have a brain injury, you can't see my injury, but it is there.

On January 11th, I sent a letter to Commissioner Bremby after a meeting with my ABI team and my advocate from OPA, they suggested I make a formal complaint to Commissioner Bremby and Governor Dan Malloy.

I did not write the letter to attack anyone, but at the same time, I have the right to ensure that no one from the Department of Social Services attacks me, for this reason, I asked that Kathy Bruni no longer be allowed to attack me or my staff. I have been repeatedly disrespected by her, in meetings, hearings, and recently, when she pulled my staff aside and told them she felt "sorry" for them because they work with me.

I did nothing to invite the attack from Mrs. Bruni except raise my concerns as an advocate for myself and other survivors. It is difficult to understand why Commissioner Bremby asked Ms. Bruni to represent brain injury survivors when she is repeatedly disrespectful to us. Can you imagine how painful her comments were to me?

Many people in our community are appalled by her lack of understanding and the quick anger when we question anything she says. She insults survivors, attempts to manipulate families, and tries to bully providers. She has done this repeatedly, and although family members, survivors and providers are afraid to say this out loud for fear of retribution by DSS and by Ms. Bruni, I am not.

I also told Commissioner Bremby that since Ms. Bruni attacked me publicly, she must apologize publicly.

In response, Commissioner Bremby wrote back to me and asked me to "move on" from the public attack that Mrs. Bruni initiated against me.

I do not appreciate that response from him as I and many others, saw how he responded when he did not like what was being said in a public Hearing in the Spring of 2014 about his statements. He was so angry that his staff had to stop him from going to the podium to confront the speaker. This is well documented from an independent video recording of the Hearing. DSS has, to this day, targeted that speaker by conducting an illegal audit, it is my understanding that they continue to pursue that individual to this day.

So, I find it hypocritical of DSS and Commissioner Bremby, to tell me to "move on" in my handling of my situation with Mrs. Bruni, as it clear DSS does not do the same.

In addition, it has come to my attention that Commissioner Bremby and DSS are manipulating the slots on the ABI Waiver. They are picking "winners" and "losers" by setting aside approximately 26 MFP slots that were not used last year, and they will have another 24 MFP slots, that will not be used this year - that is about 50 slots, that no one in the brain injury community can qualify for! And MFP will have 54 more slots added to the Waiver each year for the next three years! And then there are the DMHAS applicants who also get "reservations" at the restaurant - oh, sorry, I meant the Waiver, leaving many who have no services to languish without any real chance of obtaining a position on the ABI Waiver.

Now, in clear retribution for a denial of their proposal to outsource the Waiver, DSS has announced that due to the denial, "staff shortages" are so severe they will not be able to activate or process plans for the only 13 open slots left on the Waiver even when the money is available to do so.

I hope you are all aware of the loss of cognitive behavioral services to survivors, caused by the change made to that service, but I also realize this is getting long, and I hope you will ask myself or CTBISN to explain what has occurred and why all survivors on the Waiver have had their services reduced.

Please remember and think about the fact that DSS is toying with people's lives based on who saves the State of Connecticut the most money. It's wrong and CT should be ashamed of the Commissioner and DSS!

I encourage this committee and all legislators to do what is right. Tell DSS they must provide the slots as written in the waiver application and provide survivors with a representative who treats us like human beings!

Thank you for your time,


Public Hearing,

RE: Replacing DSS Social Workers on Both ABI Waivers.

I am a brain injury survivor receiving services from the ABI Waiver; I am not here to attack anyone, but at the same time, I must ask that at THIS Meeting, no one from the Department of Social Services (herein referred to as DSS) attacks me, or dismisses what I have to say. I may not always say things perfectly, and it is easy for you to confuse me and upset me, so I am asking that everyone remembers I do have a brain injury, you can't see my injury, but it is there. I especially ask that Kathy Bruni not be allowed to attack me or my staff, I have been repeatedly disrespected by her, in meetings, hearings, and recently, when she pulled my staff aside and told them she felt sorry for them because they work with me.

Many people in our community are appalled by that lack of understanding and the quick anger when we question anything she says, unfortunately, for brain injury survivors, this is who you have put in charge of our programs. Attacking or being cruel to me is also seen as an attack on the rest of the brain injury community and their families.

I am here today, because there is little respect within DSS Management for our community, and we do not want to yet again, have decisions made about our future without our input. At an informational meeting between families and DSS, we specifically requested that certain criteria be followed, should DSS put out a request for a private company to take over case management of the Waiver. That input, which seemed to be welcomed, was whole heartedly ignored by DSS, without any explanation to those they told they would listen too, and take into account what families had to say.

This is not a person centered program when convenient and state driven when inconvenience. This is completely unacceptable in our opinion! The ABI waiver for the brain injury community was build for us to survive, not for DSS to use it as witch hunt and play around with the lives of all these people. With that being said, we have to remember why the ABI Waiver was put into action in the first place!

I would also like to add in that I am very happy that my staff tells me everything about my case and keeps me informed it has saved me on so many different occasions from being taken advantage of especially by the DSS.

Take for an example - My service contract with DSS has been changed without my consent. DSS modified Cognitive Behavioral Program service and have redesigned my service hours for Cognitive Behavioral where it is not possible for me to use the entire budget allocated for the service. This change was done without my consent and it violates my signed service plan because my plan only has one service code available on the plan. DSS has informed my doctor that he must comply with the change. I have a big problem that DSS has put me in harm's way and placed me at risk by limiting my access to my entire budget as approved earlier this year. By doing so, DSS has placed me at-risk of re-institutionalization.

This is why the brain injury survivor family member and or his or her conservator, if any, needs to understand that they are the ones making the decisions not the program provider or DSS - they have the right to say no what your suggestion does not work for me. Department of Social Services will tell you one thing, but the laws say another. Especially when DSS changes or cut off your services without having a team meeting and then leaving up to the program provider to repay the services that you received. Yes every brain injury and case is different but the regulations stay the same no matter how it is justified; DSS may act like they are immune to our rights but they are not.

Sec. 17b-260a-1J2c Responsibilities of the Department of Social Services, DSS 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.

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 DSS 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.

When this happens the Department of Social Services has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. The Department of Social Services has a responsibility and an obligation to provide services until such time as any changes are made to the plan.

In addition, I have been told I by some politicians that I am not a good advocate and I hit "too hard"- I need to "play the game".

For those who say that, think what you would do if your beloved, precious child was hit by a car tomorrow and can no longer have the life and live the dreams you envisioned for them.

I ask each and every legislator who sat on the panel last year and casually asked Commissiomer Bremby if "waiver two would improve and increase" services to brain injury survivors to ask yourself if his simple "yes" answer would really be what you would accept and trust for your own, endangered child.

I can and should, call you out by name as in review of that Hearing, as on video on CTN, I am appalled - you may have the cushion of income and entitlements, but we do not. I am ashamed of what you did, and continue to do to brain injury survivors, veterans and disabled children and adults in this state.


I sent this out to governor Malloy asking him for Help what a surprise I got no response from him or his office.

Governor Malloy I am writing to you today for your help; My name is Craig Sears and I am a brain injury survivor receiving services from ABI Waiver one,

On January 11th (Please see attached file), I sent a letter to Commissioner Bremby after a meeting with my ABI team and my advocate from Protection and Advocacy, they suggested I make a formal complaint to Commissioner Bremby and Governor Dan Malloy.

I did not write the letter to attack anyone, but at the same time, I have the right to ensure that no one from the Department of Social Services attacks me, for this reason, I asked that Kathy Bruni no longer be allowed to attack me or my staff. I have been repeatedly disrespected by her, in meetings, hearings, and recently, when she pulled my staff aside and told them she felt "sorry" for them because they work with me. I did nothing to invite the attack from Mrs. Bruni except raise my concerns as an advocate for myself and other survivors. It is difficult to understand why Commissioner Bremby asked Ms. Bruni to represent brain injury survivors when she is repeatedly disrespectful to us. Can you imagine how painful her comments were to me?

Many people in our community are appalled by her lack of understanding and the quick anger when we question anything she says. She insults survivors, attempts to manipulate families, and tries to bully providers. She has done this repeatedly, and although family members, survivors and providers are afraid to say this out loud for fear of retribution by DSS and by Ms. Bruni, I am not.

I also told Commissioner Bremby that since Ms. Bruni attacked me publicly, she must apologize publicly. In response, Commissioner Bremby wrote back to me and asked me to "move on" from the public attack that Mrs. Bruni initiated against me.

I do not appreciate that response from him as I and many others, saw how he responded when he did not like what was being said in a public Hearing in the Spring of 2014 about his statements. He was so angry that his staff had to stop him from going to the podium to confront the speaker. This is well documented from an independent video recording of the Hearing. DSS has and to this day continues to target that speaker by conducting an illegal audit, it is my understanding that they continue to pursue that individual to this day. So, I find it hypocritical of DSS and Commissioner Bremby, to tell me to "move on" in my handling of my situation with Mrs. Bruni, as it clear DSS does not do the same.

In addition, it has come to my attention that Commissioner Bremby and DSS are manipulating the slots on the ABI Waiver. They are picking "winners" and "losers" by setting aside approximately 26 MFP slots that were not used last year, and they will have another 24 MFP slots, that will not be used this year - that is about 50 slots, that no one in the brain injury community can qualify for! And MFP will have 54 more slots added to the Waiver each year for the next three years! And then there are the DMHAS applicants who also get "reservations" on the Waiver, leaving many who have no services to languish without any real chance of obtaining a position on the ABI Waiver.

Now, in clear retribution for a denial of their proposal to outsource the Waiver, DSS has announced that due to the denial, "staff shortages" are so severe they will not be able to activate or process plans for the only 13 open slots left on the Waiver even when the money is available to do so. DSS must provide the slots as written in the waiver application and provide survivors with a representative who treats us like human beings!

I hope you are all aware of the loss of cognitive behavioral services to survivors, caused by the change made to that service, but I also realize this is getting long, and I hope you will ask myself or CTBISN to explain what has occurred and why all survivors on the Waiver have had their services reduced.

Please remember and think about the fact that DSS is toying with people's lives based on who saves the State of Connecticut the most money. It's wrong and CT should be ashamed of the Commissioner and DSS!

Craig Sears brain injury survivor

Held hostage

"Dear CTBISN Members and Supporters,
In review of recent communications with Department of Social Services (DSS), regarding the ABI Waiver unopened slots and the wait list, it appears that DSS is holding 13 extremely vulnerable people with brain injury hostage by denying them essential covered services unless and until DSS gets approval for an unrelated, debatable policy change that legislators have already disapproved of—the outsourcing of the ABI Waiver. I would certainly expect more out of a state agency that is charged with providing needed services to our most vulnerable residents. That should be DSS's number one priority, not demonstrating administrative pique over the fact that legislators, acting in good faith, disagreed with them and rejected their unrelated proposal. DSS has changed its story and reasons for not opening the slots, as well as STOPPED processing slots after legislators denied their request.

Here is a summary of what vulnerable brain injury survivors who are languishing on the wait list for ABI Waiver services are faced with:

The wait list for Acquired Brain Injury(ABI) Waiver 2 is already more than two years long. There are only 13 slots, per year, that people on the two year wait list can qualify for. This year, ABI Waiver 2 has approximately 51 UNUSED "reserved" slots that survivors on the wait list cannot access and that no one else will use.

During more than three months of correspondence, DSS stated they could not open the 13 slots for people on the wait list and ONLY attributed it to a lack of funding, promising to open up slots as funds became available.

On January 6, 2016, DSS changed their language regarding the 13 slots and began stating that in addition to the funding issue, they also cannot open the 13 slots due to a "staff shortage." And that EVEN WHEN FUNDING BECOMES AVAILABLE, lack of staff will now prohibit them from opening the only slots available to those on the wait list.

DSS apparently noticed the specific staff shortage that prohibits them from opening up slots to those on the wait list, only after legislators denied the proposal to outsource the Waiver on December 17, 2015.

DSS has now posted a new Notice of Intent regarding their proposal to outsource the Waiver, the public comment period will end in about 3 weeks and at that time, a new Public Hearing on the proposal will be scheduled. DSS has posted, on their website, links to the proposal, the fiscal analysis and a survey taken of people who are currently receiving outsourced services from CCCI. A number of people have reviewed the information posted and have significant concerns. Here is the link to the information.

Notice of Intent to Outsource ABI Waivers I and II"
http://www.ct.gov/dss/cwp/view.asp?Q=572672&A=4125

Can you believe this shit

The irony is that I thought he could help me!

My response to a letter from Department of Social Services Commissioner Roderick L. Bremby.

Hi Commissioner Bremby,

I find it ironic that you ask me; to move beyond the public attack that Mrs. Bruni initiated against me.

Commissioner Bremby, you were criticized in a forum at the Legislative Office Building in the Spring of 2014 regarding how you would manage the "slots" on the ABI Waiver. You were so angry that you attempted to charge the podium and attack the person who was speaking at the time. Your staff had to restrain you from going back to the podium. There are a number of witnesses to this event and there was an individual hired to video record the events on that day, so your behavior at the event is well documented. Your department then targeted the speaker by conducting an audit of the provider and it is my understanding that you continue to pursue that individual to this day.

I find it hypocritical for you to critique my handling of my situation with Mrs. Bruni.

It is my understanding that public hearings allow individuals to voice dissenting opinions. Nevertheless, you chose the "low road" when you were critiqued.

I did nothing to invite the attack from Mrs. Bruni and I am a brain injury survivor. I am a member of the class of individuals that you have asked Mrs. Bruni to represent. Can you imagine how painful her comments are to me and how insulting she has been to the entire community by the statements she made?

Mrs. Bruni attacked me publicly. She must apologize publicly. Most importantly, Mrs. Bruni is clearly the wrong person to represent our community. She insults survivors, she attempts to manipulate families, and she attempts to bully providers.

In addition, it has come to my attention that you (Commissioner Bremby) are manipulating the slots on the ABI Waiver in exactly the manner as was anticipated at the hearing in the Spring of 2014. You are picking "winners" and "losers" by setting aside MFP slots that are not being used, providing preferential position to DMHAS applicants, and leaving those who are at home or in a nursing facility to languish without any real chance of obtaining a position on the ABI Waiver.

The DMHAS clients are receiving community services, MFP clients are receiving community services and applicants who are at home or in a nursing facility are not receiving community services and at this time have no real hope of ever securing a position on the waiver.

When I go to a store or any other place of business I am served on a "first come" "first served" basis.

You are toying with people's lives based on who saves the State of Connecticut the most money. It's wrong and you should be ashamed Commissioner!

I encourage you to do what is right. Provide the slots as you agreed to provide them in your waiver application and provide the survivors with a representative who treats us like human beings!

Thank you for your time,

Craig Sears
Brain Injury Survivor
Advocate
Board Member
CT Brain Injury Support Network

Stop attacking brain injury survivors

Below is a copy of the e-mail that I sent to Commissioner Roderick L. Bremby along with copy's sent by certified mail to 55 Farmington Avenue Hartford, CT 06105 and to my human services advocate at OPA.

To Roderick L. Bremby
Commissioner
Department of Social Services
55 Farmington Avenue
Hartford, CT 06105

I'm putting this letter together because after my meeting with my ABI team at Bridgeport DSS which also included my human services advocate from OPA it was suggested that I put this letter together as a formal complaint to commissioner Bremby and governor Dan Malloys office also cc here.

My name is Craig Sears I am a brain injury survivor receiving services from the ABI Waiver; I am not writing this letter to attack anyone, but at the same time, I must ask that no one from the Department of Social Services attacks me, or dismisses what I have to say. I may not always say things perfectly, and it is easy for you to confuse me and upset me, so I am asking that everyone remembers I do have a brain injury, you can't see my injury, but it is there. I especially ask that Kathy Bruni not be allowed to attack me or my staff, I have been repeatedly disrespected by her, in meetings, hearings, and recently, when she pulled my staff aside and told them she felt "sorry" for them because they work with me.

Many people in our community are appalled by that lack of understanding and the quick anger when we question anything she says, unfortunately, for brain injury survivors, this is who you have put in charge of our programs. Attacking or being cruel to me is also seen as an attack on the rest of the brain injury community and their families.

Letter from my Independent Living Skills Trainer to my ABI Dr about the comment Kathy Bruni Manager, Alternate Care Unit Department of Social Services said to her after I gave my comment.

”Good Afternoon, Doctor Yesterday at the public hearing a woman by the name of Kathy Bruni came up to me after it was all over and asked me if I was "Craig's staff". I answered her, "yes I am" she then proceeded to say "oh wow I feel for you, I really do". I kind of brushed it off and laughed about it because I knew she wasn't too fond of Craig because of previous in counters with each other. After Craig was done speaking I was telling him what she said but it was because I thought it was kind of funny. He also laughed. But the day went on Craig brought to my attention that she could have meant it in a hurtful way. I didn't think so but I did stop and think about it and Craig is a very loud person when he feels strongly about something he has a tendency to get hyped up and upset. But he always come to the table with facts and if he's unsure about something he asks questions. I didn't feel that it was appropriate for her to say that to me it was one thing about asking me if I was his staff but to make a comment like she did I think it would had been better left unsaid. I don't know if she said it as an attack on Craig but I know that it was completely unprofessional especially in her line of work. I hope I didn't take too much of your time I just wanted to make sure you knew what was said and how I felt about it. We all know how things can be twisted around.

Sincerely
Stephanie, (Craig's ILST)"
Being a voice for all those that don't have one;
This constant harassment by Kathy Bruni isn't funny at all, it's insulting on so many levels. I do not go to these public meetings - hearings to be made fun of. I go to try and make others understand the difficulties I as well as so many other brain injury survivors and their families go through on a daily basis. It's not easy living a life of a brain injury survivor. All the challenges we have to face, all the people looking down on us because we are "different". Well everyone, including the state and those who put the changes into affect need to understand that we are human just like them and we have feelings too. The difference is you have less to worry about. You don't have to worry about people helping you get dressed or do your laundry or even cook you food. Some people even have to be feed! All these people who claim they "understand" well they don't, when you walk in a day or a life in my shoes or one of the so many other brain injury survivors or even their families you might understand it a little better. I consider brain injury survivors apart of my extended brain Injury family and I will continue to put on a fight. We need to understand the reason why we have a waiver in the first place that was made for brain injury survivors.

That goes without saying I can relate,
Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized.

In 1990 the state department of mental health was being sued by 25 brain injury victims who were placed in psychiatric hospitals because there was nowhere else to put them and no services or programs for them.

Click here: http://www.clearinghouse.net/detail.php?id=439&search=

My life today fact: 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.

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. How can you keep putting your trust into a system that would rather lock you up and throw away the key then help the people who actually need it?

With that being said, Is Kathy Bruni Manager, Alternate Care Unit Department of Social Services. So arrogant that she thinks she knows better than the leading experts or does she just not care about people with disabilities? (Brain Injury)

I want a public face to face apology from Kathy Bruni at the next brain injury meeting held at the state capitol televised by CTN to myself and the rest of the brain injury community which includes my ILST staff that Kathy Bruni attacked at the advisory board meeting & CTBISN, family members and supporters! Because they were present on another occasion when Kathy Bruni attacked me; including removing Kathy Bruni from the waiver altogether! Making it impossible for her to have any contact with the brain injury community and our programs!

I do not like being attacked, harassed, or made fun of by state employees because I am disabled and I come to the table with facts.

(Governor Malloy and Commissioner Bremby)
• I am ashamed of what you did, and continue to do to brain injury survivors, veterans and disabled children and adults in this state.

Craig Sears
Brain Injury Survivor
Advocate
Board Member
CT Brain Injury Support Network

Waiver 2 Judgment day

Appropriations & Human Services Committees Public Hearing & Meetings on a Proposed Amendment to the Acquired Brain Injury Medicaid Waivers,

Public Hearing,

RE: Replacing DSS Social Workers on Both ABI Waivers.

My public comment at that Hearing, as on video on CTN,

My name is Craig Sears I am a brain injury survivor receiving services from the ABI Waiver; I am not here to attack anyone, but at the same time, I must ask that at THIS Meeting, no one from the Department of Social Services (herein referred to as DSS) attacks me, or dismisses what I have to say. I may not always say things perfectly, and it is easy for you to confuse me and upset me, so I am asking that everyone remembers I do have a brain injury, you can't see my injury, but it is there. I especially ask that Kathy Bruni not be allowed to attack me or my staff, I have been repeatedly disrespected by her, in meetings, hearings, and recently, when she pulled my staff aside and told them she felt sorry for them because they work with me.

Many people in our community are appalled by that lack of understanding and the quick anger when we question anything she says, unfortunately, for brain injury survivors, this is who you have put in charge of our programs. Attacking or being cruel to me is also seen as an attack on the rest of the brain injury community and their families.

I am here today, because there is little respect within DSS Management for our community, and we do not want to yet again, have decisions made about our future without our input. At an informational meeting between families and DSS, we specifically requested that certain criteria be followed, should DSS put out a request for a private company to take over case management of the Waiver. That input, which seemed to be welcomed, was whole heartedly ignored by DSS, without any explanation to those they told they would listen too, and take into account what families had to say.

This is not a person centered program when convenient and state driven when inconvenience. This is completely unacceptable in our opinion! The ABI waiver for the brain injury community was build for us to survive, not for DSS to use it as witch hunt and play around with the lives of all these people. With that being said, we have to remember why the ABI Waiver was put into action in the first place!

I would also like to add in that I am very happy that my staff tells me everything about my case and keeps me informed it has saved me on so many different occasions from being taken advantage of especially by the DSS.

Take for an example - My service contract with DSS has been changed without my consent. DSS modified Cognitive Behavioral Program service and have redesigned my service hours for Cognitive Behavioral where it is not possible for me to use the entire budget allocated for the service. This change was done without my consent and it violates my signed service plan because my plan only has one service code available on the plan. DSS has informed my doctor that he must comply with the change. I have a big problem that DSS has put me in harm's way and placed me at risk by limiting my access to my entire budget as approved earlier this year. By doing so, DSS has placed me at-risk of re-institutionalization.

This is why the brain injury survivor family member and or his or her conservator, if any, needs to understand that they are the ones making the decisions not the program provider or DSS - they have the right to say no to what your suggestion does not work for me. Department of Social Services will tell you one thing, but the laws & regulations say another. Especially when DSS changes or cut off your services without having a team meeting and then leaving up to the program provider to repay the services that you received. Yes every brain injury and case is different but the laws & regulations stay the same no matter how it is justified. Sec. 17b-260a-1J7 states that it is the responsibility of DSS to pay for approved ABI waiver services delivered by qualified providers through its fiduciary agent on behalf of the individual.

Department of Social Services may act like they are immune to our rights but they are NOT , additional evaluations are requested, etc., it cannot hold my services in suspense while these decisions are made by my team. I have a current DSS approved ABI Waiver service plan. DSS 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 DSS, DSS 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, DSS 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 Me and my appointed advocate, and a neurophysiologist familiar with Me. 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 did contact my human services advocate at P&A on this matter. They have accepted my case and are looking into it. They will be at my next team meeting to address this matter, if DSS ignores this I will ask for a fair hearing! If this is happening to you (I suggest you do the same! If they can do it for me, they can do for you because the system was not made to help just one person.)

The one and only way that a change is possible if enough people have become fed up. But if people don’t come forward it will continue. The only way we can grow by letting people know we exist and we are fighting for everyone. Day after day I get emails about the horrible things that Connecticut is doing to brain injury survivors. They need to be stopped; we have rights for a reason, but the State tramples all over them as if they are immune. We plan on doing everything we can so we can all help each other. And with enough people complaining about the wrong, we can bring this information to the media as well as the United States. Lets finally put a stop to this, all it takes is spreading the word so let’s stick together and start fighting back with the rights we are given.

In addition, I have been told I by some politicians that I am not a good advocate and I hit "too hard"- I need to "play the game".

For those who say that, think what you would do if your beloved, precious child was hit by a car tomorrow and can no longer have the life and live the dreams you envisioned for them.

I ask each and every legislator who sat on the panel last year and casually asked Commissiomer Bremby if "waiver two would improve and increase" services to brain injury survivors to ask yourself if his simple "yes" answer would really be what you would accept and trust for your own, endangered child.

I can and should, call you out by name as in review of that Hearing, as on video on CTN, I am appalled - you may have the cushion of income and entitlements, but we do not. I am ashamed of what you did, and continue to do to brain injury survivors, veterans and disabled children and adults in this state.

Craig Sears
Brain Injury Survivor
Advocate
Board Member
CT Brain Injury Support Network

Brain Injury Survivor Speaking Up

RE: CT Acquired Brain Injury ABI Waiver 1 and II

"It was my understanding, when the committee was formed, that this was to be a committee for all of us to discuss the many issues we face with the Acquired Brain Injury Waiver. As you can see from the change in the name of committee, to "ABI Waiver II Advisory Committee" we have been told the committee cannot discuss ANY issues except those regarding Waiver 2." These were the comments I addressed to the ABI Waiver II Advisory Committee about this and other issues we are facing.

My name is Craig sears and I’m a brain injury survivor Advocate Board Member Connecticut Brain Injury Support Network. I am here to question why, at the public hearing last year, I was told a committee was being formed to help me, and all the other people in the room that day, to bring our issues directly to the legislative committees who can help us.

Instead, the promises made that day have been broken, I now understand this committee cannot discuss the issues that directly impact me and all the others at the hearing that day, and instead, it is only for people who were NOT at the Hearing, and on top of that a committee was formed for a waiver that did not even exist yet? Why does the Governor's office, Dept. of Social Services and DMHAS all negotiate and promise something they have NEVER delivered on - we all had hope, and yet again, we are deceived and manipulated. Can someone explain why I was told one thing, on record, and video recorded, but now, with NO discussion it is completely changed? Just like when we were all told ABI waiver 1 was not changing and is staying the same.

After I gave my Public Comment

Letter from my Independent Living Skills Trainer to my ABI Dr about the comment Kathy Bruni Manager, Alternate Care Unit Department of Social Services said to her after I gave my comment.

”Good Afternoon, Doctor Yesterday at the public hearing a woman by the name of Kathy Bruni came up to me after it was all over and asked me if I was "Craig's staff". I answered her, "yes I am" she then proceeded to say "oh wow I feel for you, I really do". I kind of brushed it off and laughed about it because I knew she wasn't too fond of Craig because of previous in counters with each other. After Craig was done speaking I was telling him what she said but it was because I thought it was kind of funny. He also laughed. But the day went on Craig brought to my attention that she could have meant it in a hurtful way. I didn't think so but I did stop and think about it and Craig is a very loud person when he feels strongly about something he has a tendency to get hyped up and upset. But he always come to the table with facts and if he's unsure about something he asks questions. I didn't feel that it was appropriate for her to say that to me it was one thing about asking me if I was his staff but to make a comment like she did I think it would had been better left unsaid. I don't know if she said it as an attack on Craig but I know that it was completely unprofessional especially in her line of work. I hope I didn't take too much of your time I just wanted to make sure you knew what was said and how I felt about it. We all know how things can be twisted around.

Sincerely
Stephanie, (Craig's ILST)"

This isn't funny at all, it's insulting on so many levels. I do not go to these public hearings to be made fun of. I go to try and make others understand the difficulties I as well as so many other brain injury survivors and their families go through on a daily basis. It's not easy living a life of a brain injury survivor. All the challenges we have to face, all the people looking down on us because we are "different". Well everyone, including the state and those who put the changes into affect need to understand that we are human just like them and we have feelings too. The difference is you have less to worry about. You don't have to worry about people helping you get dressed or do your laundry or even cook you food. Some people even have to be feed! All these people who claim they "understand" well they don't, when you walk in a day or a life in my shoes or one of the so many other brain injury survivors or even their families you might understand it a little better. Let's stop justifying all this nonsense and look at the bigger issue. My ILST was doing her job and looking out for my best interest. She even told me about watching my language and trying not to raise my voice because people will listen better when you are calm. But I have been calm for too long and I continue to be treated like my opinion does not matter. I consider brain injury survivors apart of my extended family and I will continue to put on a fight. We need to understand the reason why we have a waiver in the first place that was made for brain injury survivors. And stop trying to put us in the same category as mental health. I am not by all means against mental health, but they are two very different disabilities! Myself and other have made this known on many different occasions.

We call it turning the clock back to a time where there was no help for brain injury survivors or their families. In 1990 the state department of mental health was being sued by 25 brain injury victims who were placed in psychiatric hospitals because there was nowhere else to put them and no services or programs for them.
Click here: http://www.clearinghouse.net/detail.php?id=439&search=

Going back to the main reason for all of this is the comments by Kathy Bruni Manager, Alternate Care Unit Department of Social Services and how it goes to shows how arrogant State employees can be along with showing how little they know, and of how much they are in need of brain injury education. An how certain "comments are better left unsaid".

Craig Sears
Brain Injury Survivor
Advocate
Board Member
CT Brain Injury Support Network

Speaking Up For Brain Injury Survivors

Re: Dept. of Social Services DSS newest changes to the Acquired Brain Injury Waiver:

Appropriations & Human Services Committees Public Hearing & Meetings on Acquired Brain Injury ABI Medicaid Waiver Renewal & Amendments.
My comment about this and other issues we are facing,

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 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... In the 1990's I became a member of Connecticut's class action lawsuit advocating for Connecticut's Acquired Brain Injury ABI Medicaid Waiver, implemented in 1998. This waiver allows the state to permit organizations to provide non-medical services to people with Traumatic Brain Injury enabling them to live in the community outside of nursing homes and institutions. 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.

However, The State of Connecticut found a way of destroying this truly remarkable program and turning the clock back to a time where there was no help for brain injury survivors or their families. CT Brain Injury Support Network said it best this new Waiver is a HUGE step backwards for Brain Injury Survivors in Connecticut! And now, with even more devastating changes proposed, CT is continuing its efforts to dismantle a program that has been highly successful for more than 18 years! 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 endorsement and guidance of mental health treatment, because everyone with a brain injury is different and global interventions do not work with our population.

Wake up Connecticut, fact; universal services do not work for brain injury survivors... Traumatic Brain Injury TBI is separate and distinct from developmental and mental health diagnoses. Individuals with developmental disabilities and/or mental health issues may suffer a TBI. However, not all individuals with TBI have developmental or mental health issues. Finally, challenges and interventions implemented with survivors of TBI may be very different from those implemented with individuals with developmental disabilities, mental-health diagnoses and a dual-diagnosis of TBI and developmental disabilities and/or mental health issues. If the Department of Social Services and Office of Policy and Management do NOT understand this they should NOT be writing inappropriate Waiver programs!

You will not understand brain injury until it happens to you or when someone close to you has a concussion or a more serious brain injury, only then can you understand what's happening, and what Connecticut is doing people with Disabilities, with that being said;

It is pretty clear Connecticut either doesn’t care about people with disabilities, or Connecticut is so arrogant that they think they know better than the leading experts - brain Injury survivor’s, family members, advocates, professionals and supporters.

Craig Sears
Brain Injury Survivor
Advocate
Board Member
CT Brain Injury Support Network

Helping each other :)

When people come together to help each other it can be an amazing example of how good mankind can really be in improving and helping their communities.

It was a great show yesterday on Citizens Television's Sandbox Chronicles with Gabor Kautzner OEF/OIF Outreach Counseling Tech New Haven Vet Center 291 South Lambert Road Orange CT, 06477 & Elaine Burns Parent of a Brain Injury Survivor & President of Connecticut Brain Injury Support Network & Craig Sears Brain Injury Survivor Advocate Board Member CTBISN & Stephanie Bukovcik Independent Living Skills Trainer.



If you are a member, supporter of CTBISN a brain injury survivor, caregiver, provider, family member or a parent of a brain injury survivor and are interested in the differences between abi waiver one and abi waiver II I suggest you watch these videos.

Especially if you are a state employee and need education on brain injury I highly recommend you watch these videos.

AN ACT CONCERNING THE MEDICAID WAIVER APPROVAL PROCESS

Proposed Bill No. 6155 the bill is intended to change/improve the method of notifying participants and providers when changes are made/proposed to the ABI Waiver.

This was my testimony on February 10th 2015 in Hartford Connecticut at the legislative office building for this very important bill.

My name is Craig Sears and I am a brain injury survivor receiving services on the ABI Waiver 1 Program. 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. Without the services of this truly remarkable program I would probably be in an institution in prison or dead!

I am here today in support of Bill No. 6155

Currently, the State of CT does not inform, in a timely manner, Participants and Providers when they make changes to my services. They also do not inform someone like me, who has a brain injury, of proposed changes in a manner that is accessible to me! Recently DSS made changes that directly impact my life and my staff - I only learned about the last Public Hearing two days before it occurred. The State of CT must stop treating me and other brain injury survivors in this manner!

I support the following: Notice of proposed changes at least two months prior to a Public Hearing, via email and snail mail to participants, conservators and providers.

2. Major changes should require a Public Forum prior to holding a Public Hearing to gauge the public response and to give Legislators time to gather further information if there is strong resistance.

3. Public Comments allowed during the first 30 days after notification of changes is sent out.

4. No less than a 10 day notice (email and snail mail) of Public Hearings on changes.

Although this is not a notification issue, I have to say that it is clear the department of social services is going to eliminate Independent Living Skills Training and replace them with recovery assistant - which is not a rehabilitative model.

Not to mention that ILSTs are the heart of the program for brain injury survivors and a very important teaching service.

If CT takes away the only teaching service for brain injury survivors you will see another class action lawsuit in CT because the service descriptions and mental health bias of ABI Waiver II is taken from the Mental Health model of services and are inappropriate for Brain Injury Survivors. I am not mentally disabled, but a proud brain injury survivor!

The changes coming from the implementation of ABI waiver II will force brain injury survivors into lesser quality services that put our lives in the community at great risk!

This is why Bill No. 6155 is so very import to all Participants and Providers that are involved in Medicaid Waiver Programs, please take my recommendations and include them in this Bill.

Update: 2/18/15 Bill No. 6155, regarding improving the way survivors, families and providers are notified by Dept. of Social Services of proposed changes to the Acquired Brain Injury Waiver passed in the Human Services Committee with full support from all the Legislators - Thank You!

Here’s a link to the Bill No. 6155: http://www.cga.ct.gov/2015/TOB/H/2015HB-06155-R00-HB.htm

Craig Sears Member, Survivor CT Brain Injury Support Network

Pure Arrogance

Re: State of Connecticut's ABI Waiver and the changes to this waiver

The State of Connecticut 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. This is immoral and a significant civil rights violation.

This is the information I sent out to request a meeting with Lt. Governor Nancy Wyman on Jan 7 2015. Prior to this request, I as well as CTBISN had a meeting with her back in early 2014 before this law was passed. This is the same information Governor Dannel P. Malloy and Lt. Governor Nancy Wyman and Social Services Commissioner Roderick L. Bremby received at that time when they chose to ignore it. Now is the time where I need more answers then what people have been giving me. Before I, as well as others lose everything we have worked for!

My name is Craig Sears and I am a brain injury survivor receiving services on the ABI Waiver 1 Program. 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 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.

Today I'm writing about my own problems that I'm having with the State of Connecticut Department of Social Services concerning my ABI non-medical waiver plan that has been helping me to live in the community outside of nursing homes and institutions. I have five questions below that I need answered.

I, along with many other brain Injury survivor's, family members, advocates and supporters are deeply concerned about the new ABI Waiver. The new Waiver will have significant negative impacts on hundreds of brain injury survivors. ABI Waiver II will lead to significant harm, serious crisis and put the health and safety of brain injury survivors in CT at great risk.

ABI Waiver 1 was the first Medicaid-funded program in Connecticut that allows individuals with brain injuries to live in the community instead of institutions, and it does so while reducing state expenditures by providing services at an average of 75% of the cost of alternative institutional care AND receives approximately 50% reimbursement from the Federal government. Simply put, this truly remarkable Program has not only made an incredible difference in the lives of many families and survivors in Connecticut but has saved the State money!

The new Waiver is nothing but a vehicle to allow Department of Social Services to jump over people on the current wait list in order to provide services for people at the back of the wait list who will save the state more money. This unethical and immoral way of choosing who will receive services in CT is frightening for people of ALL disabilities. This means determining services is not based on need and the date of application for services; rather, CT can choose to create new methods to determine who gets life-changing services based on the calculation of how many dollars they will save CT.

ABI Waiver II was passed by State Legislators on March 28th 2014. This new Waiver is a HUGE step backwards for Brain Injury Survivors in Connecticut! 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, because everyone with a brain injury is different and global interventions do not work with our population.

Traumatic Brain Injury (TBI) is separate and distinct from developmental and mental health diagnoses. Individuals with developmental disabilities and/or mental health issues may suffer a TBI. However, not all individuals with TBI have developmental or mental health issues. Finally, challenges and interventions implemented with survivors of TBI may be very different from those implemented with individuals with developmental disabilities, mental-health diagnoses and a dual-diagnosis of TBI and developmental disabilities and/or mental health issues.

There's a world of difference between someone with TBI and someone suffering from mental illness. If the Department of Social Services and Office of Policy and Management do NOT understand this they should NOT be writing inappropriate Waiver programs for brain injury survivors!

No matter how many public forms CT holds or how many times Connecticut changes the words of the new ABI Waiver, you cannot change the fact ABI waiver 1 was capped/closed it's still the same conclusion. 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.

Questions:

1. Why did Connecticut balance the budget on the back of the disabled?
2. Why is Connecticut discriminating against brain injury survivors?
3. Why is Connecticut ignoring what brain injury survivors need and want?
4. Why did governor Dan Malloy lie to me and the state when he said that "we" (meaning both present and future brain injury survivors), are OK when we are not?

This will eventually mean, I as well as many others will end up back on the streets etc, because there will be no help for us. I don't know what tomorrow's going to bring for me, but I do know all too well as a brain injury survivor what life is like with no help. I do not want to go back to that cruel and unusual life on the streets or locked in an insane asylum or back in a prison cell for that matter.

So my last question is; what does Connecticut plan to do to fix this issue? But this time I'm asking to please have it in writing, because words mean nothing to me I need to have it in writing.

Craig Sears
Board Member, Survivor
Connecticut Traumatic Brain Injury Advisory Board
CT Brain Injury Support Network

When He Couldn't Find A School for His Daughter, This Father Established His Own

Sarah Jane Donohue practicing her motor skills at the International Academy of Hope

Patrick Donohue set out on a mission to provide top-notch education for kids with brain injuries.

Patrick Donohue’s life changed when his daughter Sarah Jane was born on June 5, 2005.

Five days later, his life changed again when he noticed Sarah Jane was noticeably lethargic and he decided to take her back to the pediatrician. A number of tests were run and a few weeks later, they discovered that she had lost 60 percent of the rear cortex of her brain — the result of being violently shaken by her baby nurse.

“I’ll never forget, the first day we took her back to the hospital and they were trying to stick an IV in her,” says Donohue, who lead a successful career as a political consultant. “Tears were rolling down her face. Her mouth was wide open but because of the brain injury she couldn’t cry. From that moment on I knew I needed to be the voice of Sarah Jane.”

Ever since, Donahue has been advocating for children with brain injuries. In 2013, he founded the International Academy of Hope, which is the only school in New York City that specializes in kids with brain-based disorders. Currently, the school has 24 students and 50 full-time staff members, causing a year’s tuition to run $135,000. The cost is reimbursed by the New York City Department of Education, but only after parents sue, claiming that there is no public school to serve their child’s needs.

Sergeant First Class Cory Remsburg Visits iHOPE

On May 21 2014 SFC Remsburg accepted the Sarah Jane Brain Foundation Col. Jack H. Jacobs Angel Award and led the pledge of allegiance with or iHOPE Students.

This award is presented to a veteran who’s continued to show leadership and courage after sustaining brain injury during war.

SFC Remsburg was severely injured on October 1, 2009, while serving his 10th combat rotation in Afghanistan deployed with US Special Operations Command. 1st Battalion, 75th Ranger Regiment and spent 3 ½ years at numerous hospitals recovering; he has received numerous medals and awards including the Bronze Star, Purple Heart, Joint Service Commendation Medal. Army commendation Medal and Valor and President Obama recognized is leadership and courage during the 2014 State of the Union Address to Congress where he sat next to First Lady Michelle Obama.

Sarah Jane's Dad to President Obama: Tackle the Number-One Public Health Crisis

Dear President Obama,

Thank you very much for inviting me to the White House Health Kids and Safe Sports Concussion Summit on May 29, and for hosting this important event.

As you know, a concussion is a brain injury. More significantly, brain injury in youth is the leading public health crisis of our time. However, youth sports-related concussions are the tip of iceberg. Brain injury occurring in youth sports represents less than 40 percent of all brain injuries in American youth. Concussions in sports have received the greatest amount of attention by the media; however, brain injuries can be caused by motor vehicle crashes, child abuse, falls, and gunshots as well as non-traumatic events like strokes, brain tumors, meningitis and seizure disorders.

Brain injury is the number-one leading cause of death and disability for our youth! According to the CDC, over 765,000 American youth enter an emergency room each year with a new brain injury, over 80,000 are hospitalized and over 11,000 die annually. When you compare these numbers with those for HIV/AIDS (approximately 56,000 new cases each year) or autism (approximately 24,000 new cases each year), the staggering incidence rate becomes clear. Basically, every 40 seconds, another American family is entering a hospital with their child suffering from a brain injury.

But these numbers only show a part of the problem.

We know that up to 80 percent of American youth in juvenile detention have a brain injury, more than half of our homeless have a brain injury and over 76 percent of battered women have a brain injury. Recent studies showed that about 40 percent of patients hospitalized for a brain injury suffer from major depression, and that 35 percent had clinically significant levels of hopelessness, 23 percent had suicidal thoughts and 18 percent attempted suicide. It is estimated about 80 million Americans are suffering from some lingering side effects of a previous brain injury (i.e., headaches, sleep disorders, memory issues, lack of concentration).

In order to really tackle this public health crisis, it will take your leadership to involve the many federal departments that have a stake in this issue, including the Departments of Health and Human Services, Education, Veterans Affairs, Defense, Justice, Transportation, Labor and Housing and Urban Development.

The International Advisory Board of the Sarah Jane Brain Foundation has already established the National Pediatric Acquired Brain Injury (PABI) Plan, which develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of American families with a youth suffering from a brain injury.

As you can see from this letter, a bipartisan group of over members of Congress have recently written to you urging you to implement the PABI Plan. Congress has already authorized and appropriated enough funding across these various federal departments to implement the PABI Plan. All that is left is for you to say, "Yes, we can!"

Youth who sustain brain injuries from sports and other causes are students first and foremost, and the Department of Education should play a major role in the PABI Plan. There are various agencies within HHS that should also play a role, including NIH, CDC, SAMSHA, HRSA and others. With more than 250,000 American veterans returning from war with brain injuries, and with more than half of those being under the age of 25 (the average age of a veteran with traumatic brain injury is about 19 years old), the Departments of Defense and Veterans Affairs should have a significant role in the PABI Plan.

Since motor vehicle crashes account for the highest number of brain injuries in young adults, the Department of Transportation must be involved. As previously noted, the impact that brain injury has within the criminal justice system highlights the need to have the Department of Justice involved. And, any young adults suffering from brain injuries have difficulty transitioning into independent living, hence the need to include the Departments of Labor and HUD.

The PABI Plan already has the support of dozens of national organizations, including the American Academy of Cerebral Palsy and Development Medicine, the American Academy of Pediatrics, the American Academy of Neurology, Iraq and Afghanistan Veterans of America, the American College of Sports Medicine and the National Education Association.

However, this is not just a federal issue. We need to include the private sector, medical institutions and foundations involved in solving this public health crisis, which is why we are proposing to seek private support to implement the PABI Plan by hiring over 5,000 veterans and veterans' family members to serve as the case managers across every state to implement the PABI Plan.

Implementing the PABI Plan will have the largest impact on bending the cost curve of our healthcare expenditures, since many of our expenses from Medicaid and even Medicare go toward treating brain injury.

With your leadership, the PABI Plan will go down as your administration's greatest legacy. It will not only change the lives of millions of American families today but will help us advance our knowledge of the brain faster than any other initiative. Sincerely,

Patrick B. Donohue, J.D., M.B.A. Founder of the Sarah Jane Brain Foundation Founder of the International Academy of HOPE (iHOPE) Father of Sarah Jane Donohue

P.S. The next time you are in New York City, we would like to invite you to visit our school in Central Harlem, the International Academy of HOPE (iHOPE), which is the only school for kids with a brain injury in New York City.

American Hero visits iHOPE in NYC

On Wednesday, May 21, 2014, The International Academy of HOPE (iHOPE) 101 West 116th Street, 2nd Floor, New York, New York. Had a special Sarah Jane Brain Foundation Angel Award presentation to SFC Cory Remsburg who was honored by President Obama and the U.S. Congress during his State of the Union address (see press release below) along with Bob Woodruff attending and receiving his SJBF Angel Award.
NEW YORK, NY - The Sarah Jane Brain Foundation presented the Col. Jack H. Jacobs Angel Award to Sergeant First Class (SFC) Cory Remsburg during a luncheon ceremony at The International Academy of HOPE (iHOPE) on Wednesday, May 21, 2014. Prior to receiving the award, SFC Remsburg led the iHOPE students in the pledge of allegiance. Located in Central Harlem, iHOPE is the only school in New York City focused on students with a brain injury. During the luncheon, Dr. Ronald Savage, President of The Sarah Jane Brain Foundation discussed the link between students at iHOPE and our returning young veterans with a brain injury.

The Col. Jack H. Jacobs Angel Award is presented to a veteran who sustained a traumatic brain injury during war while they were under 25 years of age and who upon their return home continues to show leadership and courage. Colonel Jacobs is a retired U.S. Army officer who was awarded a Medal of Honor for his historic actions during the Vietnam War and currently serves as a military analyst for MSNBC and Vice Chairman of the Congressional Medal of Honor Foundation.

Angel Award recipient, Sergeant First Class (SFC) Cory Remsburg, was severely injured on October 1, 2009, while serving his 10th combat rotation in Afghanistan deployed with US Special Operations Command, 1st Battalion, 75th Ranger Regiment and spent 3 ½ years at numerous hospitals recovering. He has received numerous medals and awards including the Bronze Star, Purple Heart, Joint Service Commendation Medal, Army Commendation Medal with Valor and President Obama and the United States Congress recognized his leadership and courage during the 2014 State of the Union Address to Congress where he sat next to First Lady Michelle Obama.

This year’s other Angel Award recipients include:
Dr. Sanjay Gupta Award: Bob Woodruff, ABC News
Diane Gooch Angel Award: John D. Corrigan, PhD, ABPP - The Ohio State University
Dr. David Hovda Angel Award: Gerard Gioia, Ph.D., Children’s National Health System
Dr. Kristjan Ragnarsson Angel Award: Peter D. Patrick, Ph.D., University of Virginia Medical School
Marilyn Spivack Angel Award: Barbara Geiger-Parker, Brain Injury Alliance of New Jersey
Cynthia Gibbs Angel Award: Teresa Morros, Because I Can
Zachery Lystedt Angel Award: Christopher C. Giza, M.D., UCLA
Sarah Jane Donohue Angel Award: Bryan Steinhauer, CPA, Minds Over Matter

I was honored to attend the “American Hero Receives Angel Award.” I want to thank everyone who has been a big help putting all this hard work together and helping the less fortunate. It always gives me a good feeling knowing that these kids have a place to go where they can get the proper care.

Sincerely,
Craig Sears
(National Advisory Board Family at The Sarah Jane Brain Foundation)

Brain Injury Survivors Being Thrown in the Streets!

I don’t get this how/why the State of Connecticut is letting Employment Options, LLC get's away with this!
This is an email that Paul G. Bauman Executive Director Employment Options, LLC 800 Main St. South Suite 102 Southbury, CT 06488 sent to Dr.Tariq Abdulaziz after Dr. Abdulaziz tried to help and protect his clients:

"Yesterday, we informed the Department of Developmental services that due to ongoing unethical practices on your part we must terminate any working relationship with you as of May 7, 2014. The unethical practices to which we speak have been outlined in a formal complaint to the department. Any conservator that chooses to continue your services as cognitive behaviorist after the above date will be discharged from our agency. Following this 30 day timeframe we will have no contact with you except through our attorney. We have requested to DSS that no client meetings take place during this 30 day time period. During the 30 days, all communication should be through me, and that only by email. No Employment Options staff are permitted to communicate with you directly. Effective immediately, you will no longer be allowed on any property belonging to Employment Options or Michele Zurko-Smith. if you desire to see clients, we will assist in transporting them to you until May 7th. If desired, please send me a list of clients you wish to see with the time and location."

As you can see from above Employment option, LLC is trying to cover up their mistake by putting the blame on someone else as they tried to do to me when I made formal complaints against their service, which was unethical and illegal treatment of me. The only difference was that I was a client that proves them wrong. Just want to make this clear you can fire Employment Options LLC and stay with the doctor of your choice. 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. 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. It’s a person center program Employment option LLC or any other service provider like the State of CT, DSS cannot tell you who your doctor or etc can be.

Craig Sears, Member CTBISN (Ct Brain Injury Support Network)

References Slavery in Southbury: http://craigsears.blogspot.com/2014/04/slavery-in-southbury.html

Slavery in Southbury

I can’t seem to understand why it’s okay to take someone who is not an American Citizen and put them to work with 1 to 3 clients a day for over 128+ hours a week? Why isn't Department of Social Services taking people who are American Citizen and who have gotten the proper training for these jobs? It’s not fair that these survivors have to basically live in fear because they have horrible services from not only the state of Connecticut but their own “ILST providers”. I feel it’s a bit ridicules that the state of Connecticut cannot see what is going on. But instead pushes all this under the carpet and destroy the lives of the brain injury survivors.
Concerning: Employment Options, LLC 800 Main St. South Suite 102 Southbury, CT 06488

Lieutenant Governor Nancy Wyman!
Office of the Governor
210 Capitol Avenue Hartford, CT. 06106

RE: Allegations of Identity theft amongst human services workers Attention: Lieutenant Governor Nancy Wyman

I am writing to you regarding an issue of concern that is very likely to impact the Office of the Governor. In the past month I have reported these issues to Homeland Security, Office of the Attorney General, Department of Social Services (DSS), and Allied Community Resources. The media is researching this issue and the information herein will be going to John G. Rowland at WTIC NewsTalk 1080. It is my hope that the administration, DSS, and the media will thoroughly investigate the allegations listed herein. I believe that the administration may at least look into the allegations here but it is possible that DSS may have reason to avoid a proper investigation. Therefore, I am giving the information to as many different entities as possible with the hope that someone dispels the allegations herein. There are vulnerable people with disabilities who may be at-risk. In addition, we have vulnerable immigrants who may be working in an environment that is akin to modern day slavery!

The allegations are as follows:

1.There is allegedly an identity theft or identity manipulation ring at a company that provides services to individuals on the Acquired Brain Injury Waiver Program. Dorian Long (DSS) can provide you with the name of the company!

2.It is alleged that the staff purchase and sell identities from immigrants with work visas. 3.It is alleged that the individuals who purchase the identities pay the individual from whom they have purchased the identity.

1.An individual at the company worked under the name Adjowa (odd jew wah). This individual indicated to me that Adjowa is not her real name but is the name of her sixty year old aunt who has since returned to Ghana. Adjowa is at best thirty-five years of age.

2.Adjowa stated that when she arrived in Connecticut she did not have a work visa and chose to use her aunt’s information to work as her aunt had a work visa.

3.Adjowa stated that when she received her work visa in her real name (Matilda Pearson) that she sold the name and identity of Matilda Pearson to her cousin. I do not know the cousins real name.

4.The cousin in turn took Matilda’s information and secured work at the same company.

5.Obviously, the individual who worked under the name Matilda Pearson is not really Matilda Pearson and could not have been properly vetted by the company.

6.Adjowa (i.e., Matilda Pearson) indicated that the identity she gave her “cousin” contained the picture of Adjowa (i.e., Matilda Pearson). Adjowa had worked at the company for at least four years prior to her cousin arriving at the company. One assumes that company officials would have recognized the picture of a long-time employee (I.e., Adjowa or Matilda Pearson) being provided by another individual claiming to be the person in the picture.

7.I have always known Adjowa (i.e., Matilda Pearson’s) husband by the name Bruce. Adjowa indicated that her husband’s name is not Bruce. She indicated that her husband’s real name is Vincent. 8. Bruce (i.e., Vincent) worked at the same company years ago. Adjowa indicated that Bruce (i.e., Vincent) has sold his identity to workers at the company on two separate occasions.

9. Most importantly, Adjowa indicated that there have been a number of staff, primarily from Ghana that have implemented this scheme at the company.

10. Adjowa indicated that it is an open secret in the Ghanian community that this scheme can lead to employment for those from Ghana without a work visa.

11. Individuals at the company are paid a salary and are required to work as many as 128 hours per week or more. This practice is legal. However, these individuals are providing services to as many as three individuals with brain injury simultaneously which brings into question the quality of care and the ethics of such a practice. Granted 56 of the hours are likely overnight services. However, that still leaves an average of 10 hours of service per day during the week to provide direct care service to three individuals.

12.Due to the complexity of coordinating such services, survivors rarely venture into the community after work hours and on weekends. Essentially, survivors are relegated to their residence from Friday evening until Monday morning. This is a community-based program that has been marketed to Centers for Medicaid Services as promoting community integration.

13.DSS has approved a number of staff from this company to provide the highest level service on the program (i.e., Independent Living Skills Training). DSS has increased the criteria needed to secure the ILST designation. Individuals from this company have attempted to secure work outside of the company in question. When their documents are submitted by a competitor who wants to hire the staff the fiduciary (Allied Community Resources,, Inc) informs the potential new provider that these individuals are not approved to provide the service. Therefore, they are approved to provide the service under the agency with engaging in possible identity issues but not allowed to provide the service to other companies. It is not the case that the agency has a special designation that allows them to special consideration for the ILST service. The company does have a special designation for vocational services but not ILST.

14.The case against this alleged larceny can be made without a piece of documentation directly from the company. Adjowa indicated that she placed her paycheck from the company into her Matilda Pearson bank account. She stated that the cousin deposited her check into a bank account with her real name.

15. The Connecticut Drivers License for Matilda Pearson had the following address: 1331 Burnside Avenue, East Hartford, CT.

16.I asked Adjowa to come forward. She refused. She stated that she and her husband have applications for citizenship and she does not want to harm her chances of obtaining citizenship.

4.There have been alleged larcenies committed against individuals with brain injury at this company.

5.A Connecticut State Trooper (Oxford Resident State Trooper Ryan Frechette) pursued a Ghanian immigrant regarding a larceny. He requested a picture of the suspect as well as the suspect’s personnel file. When he looked at the picture and the Connecticut Drivers License he noticed that these were not the same individual. This is a different individual from the group mentioned under item number 3.

6.The Connecticut State Trooper placed a called the woman who is pictured on the Drivers License. The Trooper indicated that the woman stated that her identification had been stolen. The Trooper stated to me that he does not believe the woman. He stated that his instincts are telling him that this woman knows the woman who is working under her identity.

7.In November 2013 an employee at the company was arrested for working under a false social security number. It is believed that the woman who was arrested is also the woman the trooper called. That is the belief of a group of people who have seen the pictures.

8.I spoke with a Ghanian immigrant who is legally employed in law enforcement for the State of Connecticut. He has also worked in the field of Human Services. He indicates that this identity pyramid scheme is a pervasive. He believes that as many as half or more of the Ghanian employees that have ever worked at the company may have done so under false documents.

9.An additional issue is that the company allegedly misleads consumers regarding their services. For example, let’s say the brain injury survivor is scheduled to receive three services. Let’s call the services A, B, and C. For sake of simplicity let’s say the client is to receive 20 hours of A, B, and C respectively for a total of 60 hours. The agency places a staff person with the survivor and provides 60 hours of service. However, the staff person is approved to provide service A and B but is not approved to provide service C. The company does not bill for service C but it also does not indicate to the survivor, the family, or the community-based team that the person providing the service is not approved to provide the service. If the team were informed they could hire a different company solely to provide service C. Imagine going to get your vehicle repaired and you need three parts. The service professional gives you two parts and rigs your car so it is not obvious to you that the company did not have the third item. Whether it is done to prevent a potential competitor from entering the space or an attempt to buy time to later secure these hours it is unethical at a minimum and it seriously impairs evaluation of client progress as the team is assuming the client is receiving the services.

10.One of the homes managed by a Ghanian was found to have locks on the refrigerator, limited phone access for the clients (i.e., staff have cell phones and a fax machine occupies the phone line), and unclean living environments as documented through photographs taken by visitors. Please request a letter written by a conservator who recently removed her survivor from the agency due to similar concerns. The case is based in Danbury Connecticut.

11. A representative of the company indicated to me that a staff person of one of my clients had taken the clients’ identity and secured food from the Southbury Food Bank. It is believed that the food was given to another individual and the food mailed to Ghana.

12. The company provides each house with a food card on a weekly or biweekly basis. The cards are alleged to be converted into cash or gift cards and these funds are sent to Ghana.

13. The individual who related information in bullets 11 and 12 was informed of what I learned about Adjowa (i.e., Matilda Pearson). A week later Adjowa (i.e., Matilda Pearson) left the country and returned to Ghana. Adjowa indicated to me that she did not believe that the current administration would take serious action against her and she planned to return to her home in East Hartford. She did indicate that her father is ill and she would go to Ghana but she had every intention of returning to her 1331 Burnside Avenue East Hartford residence.

14.Interestingly, Adjowa indicated that she is approved to work as an ILST under the name Matilda Pearson. Therefore, she has contacted Allied Community Resources and secured approval to go into the homes of people with brain injuries as private contractor despite the allegations herein.

15.Two additional issues that are not directly related to the undocumented workers but shows a pattern of problems are as follows: A staff person was killed in a motor vehicle accident. It is alleged that the staff person had just returned from transporting a client. It is alleged that the brakes on the company car failed. A client was injured in a motor vehicle accident. It is alleged that the client was unbelted. It is alleged that the staff could not provide a reasonable explanation for being in the area where the accident occurred.

The questions I have may not be relevant to the Office of the Governor but they may be relevant to the public.

1.Is the safety and security of individuals with disabilities a serious issue for Governor Malloy and his administration?

2.Would it be prudent to investigate the allegations listed above to ensure that individuals in our state are not subjected to undocumented workers?

3.Is it Medicaid fraud to receive payment for work done by undocumented workers?

4. How are workers allowed to provide the highest level service on the program for one company but the same individuals cannot provide the same service for other companies?

5. Has DSS created a system (wittingly or unwittingly) of indentured servitude within this company? Essentially, is DSS enslaving Ghanian immigrants by not allowing those who may be working legally to transfer their credentials to other companies?

6. Other companies are attempting to have their staff (American citizens) approved to provide the service but are frequently rebuffed by the fiduciary due to stringent and arbitrary rules put in place by Dorian Long who administers the program. Allied Community Resources (ACR) indicates that the rules regarding approval are exclusively determined by Dorian Long (DSS) during weekly phone conferences between Ms. Long and ACR management.

7. The company in question is believed to be the largest company on the waiver program. Is it possible that there is a private agreement between DSS and the agency? The rumor on the street is that the company is a potential target for union takeover. While there is no proof to support this theory, it is reasonable that competitors might begin to question why there appears to be alleged preferential treatment.

I bring these issues to your attention for a number of reasons. Let’s be clear, the most basic reason is that I have knowledge of these issues. If something happens at a later point and it is stated that I was aware of the practice, I have no doubt that I would be held accountable as I should. Informing is a thankless job and my life would be a lot simpler if I did not know this information. However, my burden is now your burden! If there are any questions please contact me directly.

Respectfully, Tariq Abdulaziz, Ph.D., M.S., MBA! President & Director, NeuroStrategies, Inc.

I have been through the ringer, between the State of Connecticut as well as program providers such like Employment Options LLC. I want to personally thank my Doctor (Tariq Abdulaziz) for everything that he has done already as well as the fight he continues and the support he gives to not only brain injury survivors but all people with disabilities. We definitely need more doctors just like him. People who actually care!

Craig Sears, Member CTBISN (Ct Brain Injury Support Network)

Lance Leads Letter to The President: “Implement the Pediatric Acquired Brain Injury Plan”

WASHINGTON, D.C. --- Congressman Leonard Lance (NJ-07) today announced over 100 bipartisan cosigners of a letter to the President urging the implementation of Pediatric Acquired Brain Injury (PABI) Plan. Lance, a member of the Energy and Commerce Health Subcommittee, spearheaded the bipartisan letter with Reps. Langevin (RI-2), Rangel (NY-13) and Grimm (NY-11) to combat pediatric brain injury: the leading cause of disability and death in children and adolescents in the United States.

“Implementing the Pediatric Acquired Brain Injury (PABI) Plan will make a real difference in the lives of many. Too often we hear the tragic stories of brain injuries stemming from military service, accidents or falls and the hardship such trauma puts on the injured and their families,” said Lance. “Putting in place the PABI Plan will end the complicated framework of care and incorporate a seamless, data-driven system to put children and families first.”

PABI is caused by trauma such as motor vehicle crashes, sports-related concussions, child abuse, falls or blast injury from war – the signature wound of young veterans returning home from combat. In addition, it also includes non-traumatic causes such as epilepsy and seizure disorders, meningitis, brain tumors, or strokes. Each year, more than 765,000 young Americans under the age of 25 enter an emergency department with a brain injury.

“The millions of families who have a child or young adult with a brain injury are very grateful for the continued bi-partisan Congressional support to develop a seamless, standardized, evidence-based system of care for American youth who suffer from a brain injury,” said Patrick Donohue, who in 2007 established the Sarah Jane Brain Foundation, named for his daughter was violently shaken by her baby nurse when she was five days old, causing a severe brain injury. “We have the utmost confidence President Obama will act on this public health crisis.”

Due to the lack of federal research for PABI over the past thirty years, families face a patchwork system of care – varying from state to state and from one doctor’s office to another. In response, a wide range of stakeholders, including the Sarah Jane Brain Foundation, came together in 2009 to create the first-ever National Pediatric Acquired Brain Injury Plan.

Barbara Geiger-Parker, the President & CEO of the Brain Injury Alliance of New Jersey, also praised the letter. “The Brain Injury Alliance of New Jersey recognizes the need for a seamless, standardized, evidence-based system of care that is available to children, young adults, and their families so that they may maximize their quality of life. Enacting the Pediatric Acquired Brain Injury Plan helps to achieve this important goal. We appreciate the leadership of Congressman Lance and other members of Congress who, in a bipartisan effort, have come together to address the needs of children, youth, and families impacted by the consequences of brain injury. The Alliance encourages Congress and the President to implement the Plan immediately.”

The letter gathered attention from advocates urging their Member of Congress to sign on to the effort during the month of March, which is brain injury awareness month. Implementing this plan does not require legislation or the appropriation of any new funds and would dramatically help improve the lives of youth who suffer from pediatric acquired brain injury and their families.

A simple guide to starting a local brain injury support group


What is a support group? Do I need one?

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

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

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

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

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

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

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

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

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

Does our community need a support group?

If so, how do I start one?

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

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

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

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

2

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

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

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

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

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

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

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

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

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

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

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

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

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

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

4

Name: ________________________________

Address: ______________________________

City/State: _______________ Zip: ________

Email: ________________________________

I would like to help organize the group:

• Yes o No

Other information:

______________________________________

___________________

___________________

Home phone: __________________________

Cell phone: ____________________________

Preferred meeting schedule:

Day: ______________ Time: _____________

Interest: o Family member

• Survivor

• Professional

Special interest:

______________________________________

Support group contact log

Name: ________________________________

Address: ______________________________

City/State: _______________ Zip: ________

Email: ________________________________

I would like to help organize the group:

• Yes o No

Other information:

______________________________________

______________________________________

Home phone: __________________________

Cell phone: ____________________________

Preferred meeting schedule:

Day: ______________ Time: _____________

Interest: o Family member

• Survivor

• Professional

Special interest:

______________________________________

Name: ________________________________

Address: ______________________________

City/State: _______________ Zip: ________

Email: ________________________________

I would like to help organize the group:

• Yes o No

Other information:

______________________________________

______________________________________

Home phone: __________________________

Cell phone: ____________________________

Preferred meeting schedule:

Day: ______________ Time: _____________

Interest: o Family member

• Survivor

• Professional

Special interest:

______________________________________

5

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

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

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

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

Refer to page 7 for a meeting preparation checklist.

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

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

6

Meeting preparation checklist

Meeting location: __________________________________

Date: ________________________ Time: _________________

• Media notified

• Reminder cards mailed

• Phone contacts made

• Refreshments arranged

• Speaker confirmed (if applicable)

• Name: ____________________ Phone: ___________________

• Meeting materials prepared:

• Name tags o Note cards

• Pens o Paper

• Handouts and other program materials

Notes:

_________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

7

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

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

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

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

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

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

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

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

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

8

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

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

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

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

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

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

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

Keep the meeting date and time consistent each month.

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

Encourage group participants to decide on speakers and program content.

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

9

Brain injury support group sign-in sheet

Date: _____________________

Name Address Contact information

________________________ _________________________ _____________ /__________ Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

10

Brain injury support group questionnaire

Name: (optional) _______________________ Phone number: ________________________

Address: ______________________________ City/State: __________________ Zip: _____

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

_________________________________________________________

__________________________________________________________

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

• Yes o No please explain why:

________________________________________________________

Are you and your family getting the services you need?

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

__________________________________________________________

__________________________________________________________

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

__________________________________________________________

__________________________________________________________

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

__________________________________________________________

__________________________________________________________

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

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

__________________________________________________________

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

• Yes o No If yes, how will you be able to help?

__________________________________________________________

__________________________________________________________

Comments:

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

11

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

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

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

Grocery stores can participate by donating refreshments for meetings.

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

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

Local entertainment, such as theaters, sport teams and other public venues, may be approached for free admission for group members. Maintaining a treasury may not be necessary in the early stages of forming a group. However, it may be something to look at in the future. Many groups use the natural supports within the community. If the group receives cash donations, keep records and receipts of what the money was used for. 12

The future of your group

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

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

Craig Sears
National Advisory Board Family
The Sarah Jane Brain Foundation
101 West End Avenue, #23B
New York, NY 10023
212-576-1180

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