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.

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:

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".

Update after I sent the letter from my staff to Kathy Bruni Boss and their Bosses.

Dear Mr. Sears:

I have spoken with Kathy Bruni about this, and both of us would like to offer a sincere apology for this interaction. No matter what the intent of the conversation, we hear your perspective and want to work respectfully and directly with you.

Please don’t hesitate to let me know if you wish to discuss this further.

Best regards,


Kate McEvoy, Esq.
Division of Health Services
Connecticut Department of Social Services
55 Farmington Avenue
Hartford, CT 06106
Then I sent this below.

I have two questions.

1. Fact: The comments by Kathy Bruni Manager, Alternate Care Unit Department of Social Services DSS goes to shows how little CT State employees know, and of how much they are in need of brain injury education.

2. Fact: Why is Kathy Bruni even on the Advisory Committee for brain injury when she knows nothing about brain injury!

What does Connecticut DSS plan to do to fix this issue?

Craig Sears
Brain Injury Survivor
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
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.


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:

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.


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.

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:

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.


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

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

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

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

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

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

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

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

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

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

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

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

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

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


Name: ________________________________

Address: ______________________________

City/State: _______________ Zip: ________

Email: ________________________________

I would like to help organize the group:

• Yes 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:



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

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

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

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

Refer to page 7 for a meeting preparation checklist.

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

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


Meeting preparation checklist

Meeting location: __________________________________

Date: ________________________ Time: _________________

• Media notified

• Reminder cards mailed

• Phone contacts made

• Refreshments arranged

• Speaker confirmed (if applicable)

• Name: ____________________ Phone: ___________________

• Meeting materials prepared:

• Name tags o Note cards

• Pens o Paper

• Handouts and other program materials









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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

Keep the meeting date and time consistent each month.

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

Encourage group participants to decide on speakers and program content.

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


Brain injury support group sign-in sheet

Date: _____________________

Name Address Contact information

________________________ _________________________ _____________ /__________ Street Home phone / Cell phone


_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone


_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone


_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone


_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone


_________________________ ________________________

City State Zip Email address


Brain injury support group questionnaire

Name: (optional) _______________________ Phone number: ________________________

Address: ______________________________ City/State: __________________ Zip: _____

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



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

• Yes 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?











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

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

The hosting of a National Pediatric Acquired Brain Injury Plan to prevent a future Newtown

The National Town Hall was hosted on June 5, with a birthday celebration for Sarah Jane who turned 8, at George Washington University in D.C. Our featured panelists were Dr. Jeremy Richman, who founded the Avielle Foundation Named after his 6-year-old daughter was killed in Newtown, along with other. The Honorable Denny Rehberg Co-Chairman, Mercury/Clark & Weinstock and Former United States Representative (R-MT): The Honorable Patrick Kennedy Co-Founder, One Mind For Research and Former United States Representative (D-RI): Tish Haldeman (Founder of the John Blair Haldeman Foundation named after her son who committed suicide due to brain injury); Craig Sears (Brain injury survivor); Dr. Gerard Gioia, Division Chief, Neuropsychology & Director, Concussions – Safe Concussion Outcome Recovery & Education Program (SCORE) Children’s National Medical Center; Dr. Roma Vasa (Assistant Professor, Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Director of Education and Training, Kennedy Krieger Institute); Dr. Peter Patrick (Pediatric Neuropsychologist, Emeritus Associate Professor of Clinical Pediatrics University of Virginia School of Medicine); Scott Thompson, M.S., M.Div., LMHC (Director, Veterans Mental Health Coalition of New York City & Associate Director, National Traumatic Brain Injury and Emotional Wellness Alliance Mental Health Association of New York City)

My contribution to help achieve and provide the information that is needed to help others.

My name is Craig Sears. I'm a survivor of a traumatic brain injury. This is my personal experience about what happens when brain injury goes untreated. I was making a very good life for myself. I had a great family and a good job in construction and as a part-time mechanic. I had a great girlfriend and lots of friends. I was living the American Dream. And in a heartbeat it was all gone.

It was a beautiful Connecticut summer afternoon and I was out riding my motorcycle. I had just turned 20. I came up over a hill, and there was a car going the wrong way. It was too late. I couldn't stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I was not wearing a helmet and I landed head first into a curb, just missing a telephone pole. I have no memory of the next 6 months. That period of time is a Black Hole in my life. I was in and out of a coma, undergoing multiple surgeries. The doctors operated on my head, and did what they could to patch up my body. This was the beginning of my physical recovery.

Though my body was healing, a bigger problem went untreated. And no one realized it. Insult was added to injury. This is where I fell through the cracks. Despite having my head in a cast, no one identified the true nature of my injury as being a Traumatic Brain injury. That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died. My struggles were constant, and I had to relearn everything. How to walk, how to talk, how to eat, how to use the bathroom; How to care for myself, and then there was the incessant pain, the physical pain of my body overcoming weakness and injury. Worse yet, there was the anguish of not knowing who I was.

Things went from bad to worse. Soon, the treatment center I was in transferred me to a mental health ward. I spent the next 9 months locked in against my will, 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 Psychiatric issue.

In the years that followed there was little knowledge on TBI in the medical field and even less in the public. As a result, my physical injuries were confused with intoxication or drug abuse and my brain injury misdiagnosed as mental illness. I was falsely arrested and institutionalized time and time again. My life turned into a constant tug of war. If it was not a Psychiatric hospital it was a jail cell. I ended up with several minor arrests for public urination and things of that sort. The state of Connecticut did find a way to use my injury against me. It was a probation violation, for which I would ultimately receive a five-year prison term.

During my incarcerations; I suffered many indignities and witnessed atrocities. When I would go to the correctional officers and tell them that I feared for my life, they would send me to medical and put me in a mental health cell, where I would be stripped completely naked and left there for days. When I would knock on the door to get someone’s attention, I would get pepper-sprayed directly in the face then the CO’s would come in and 4-point restrain me on a metal cot, then a nurse would come into the room and forcefully drug me, when this was over, I would be sent back to my cell. I was always so scared to come out of that 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. 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 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 our cell. After every wreck they do a count and when the CO came by the 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 Administrative Segregation Unit also known as AD/SEG or the hole; for 2 weeks. From there I was sent back to my cell and was put on Confinement to Quarters 23 hours a day lockdown, where you can only come out of your cell for a shower. They say you get an hour out of your cell but in reality its 15minutes. For the next 30 days it was like a revolving door, I can’t count how many times this happened to me. Words cannot express the horror of it all.

While I was in prison I learned that I was part of a class action lawsuit that resulted in the implementation of Connecticut’s ABI Medicaid Waiver implemented in 1999. Even though it was too late for me at the time because I was already incarcerated; they refused to help. This waiver allows the state to permit organizations to provide non-medical services to people with Traumatic Brain Injury enabling them to live in the community outside of nursing homes and institutions. I immediately requested that I be provided a program upon my release from prison!

As a brain injury survivor, I know firsthand how awful it is to have lost my independence.

My life today, 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've been a participant in the Acquired Brain Injury Waiver Program for several years in CT and I have YET to find anyone that I don't need to tell what to do, or anyone that does not talk down to me like I'm a 2 year old, or even try to get one over on me. I believe that my rehabilitation has been curtailed as a result. I am frequently required to see a doctor or go into a state team meeting and prove that I am disabled. It's 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. Instead of paying $100,000 a year on services for me, they rather waste $250,000 a year of tax payer’s money to have kept me in prison.

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.

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

The United States calls July 4th Independence Day, as a Brian injury survivor I know firsthand what it is like to have lost my independence, the day this PABI plain is signed into law I call it Independence Day across the Nation for Brian injury survivor's and their families.

The United States calls July 4th Independence Day, the day this PABI plain is signed into law I call it Independence Day across the Nation for Brian injury survivor's and their families.


Thank you so much for giving me this opportunity! I consider myself to be a very fortunate brain injury survivor and to be a voice for those forgotten children and families.

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

My condolences to all those people who suffered the loss of their loved one(s) in the Sandy Hook Tragedy - We are with you supporting your mission. You’re such an Inspiration to us all, God bless!

Along with Former U.S. Rep. Patrick J. Kennedy who received the SJBF Lifetime Achievement Award back in April for his participation in this amazing cause. The Honorable Denny Rehberg Co-Chairman, Mercury/Clark & Weinstock and Former United States Representative (R-MT)

Craig Sears
National Advisory Board Family
The Sarah Jane Brain Foundation
651 West 169th Street, Suite 42
New York, New York 10032

“Things work out best for those who make the best out of the way things work out!”
About The Sarah Jane Brain Foundation

The Sarah Jane Brain Foundation (SJBF) is an international non-profit named after seven-year-old Sarah Jane Donohue. Sarah Jane was violently shaken by her baby nurse when she was just five days old, breaking four ribs, both collarbones and causing a severe brain injury. Since the foundation was launched in October 2007, it has quickly grown into one of the largest organizations in the world dealing with the #1 leading cause of death and disability for American children and young adults up to 25 years of age: acquired brain injuries. Acquired brain injuries are caused either by trauma (i.e., motor vehicle crashes, child abuse/abusive head trauma/shaken baby syndrome, youth sports concussions, blast injury from war, falls, gunshot wounds) or non-trauma (i.e., strokes, brain tumors, meningitis, near-drowning). In the United States, over 765,000 American youth enter an Emergency Department with a new brain injury every year, over 80,000 are hospitalized and over 11,000 die. Basically, every 40 seconds another family enters an Emergency Department with their child suffering from a brain injury and these only represent the brain injuries that are actually identified (it is estimated two to three times as many go undiagnosed each year). As a reference point, there are about 24,000 new cases of autism and 56,000 new cases of HIV every year.

The SJBF International Advisory Board includes experts from just about every major medical institution (from MD Anderson and Mayo Clinic to Johns Hopkins and Children’s National Medical Center) and Research University (from Harvard and Yale to University of Virginia and Duke). A full list of the SJBF International Advisory Board is located on its website, Over 75 members of the Advisory Board met in January 2009, in New York City to draft the first-ever National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care that is universally accessible for all children and young adults suffering from a pediatric acquired brain injury (PABI) as well as their families.

On June 5, 2009, Sarah Jane’s fourth birthday, SJBF announced the largest healthcare collaboration in U.S. history dealing with PABI – one institution from every state plus the District of Columbia and Puerto Rico was selected as a SJBF State Lead Center of Excellence.

In August, 2009, SJBF converted the PABI Plan into a $930 million multi-department, multi-year grant proposal to begin funding and implementing the plan. In October 2009, SJBF had a concurrent resolution of Congress (H. Con. Res. 198) introduced which endorsed the PABI Plan as the plan to prevent, identify and treat PABI and it established a national political consensus with over 100 bi-partisan Members serving as a co-sponsor. In July 2011, SJBF had a bill introduced in Congress (H.R. 2600) to fund a $2.9 billion, seven-year, federal initiative to implement the PABI Plan. Over 145 bi-partisan Members of Congress agreed to co-sponsor this effort from conservatives like Reps. Ron Paul, Michelle Bachmann, Mike Pence and Michael Burgess to liberals like Reps. Barney Frank, Ed Markey, Raul Grijalva and Charlie Rangel. SJBF is currently working with The United States Senate to pass federal legislation to implement the PABI Plan.

SJBF has expanded its efforts internationally as it has begun developing PABI Plans for other countries. The goal is to establish and implement a PABI Plan for every country for every PABI family around the world.

For more information and to understand what/why SJBF is doing, please take a few minutes to read Patrick’s letter to Sarah Jane when she turned five:

National Child Abuse Awareness Day Million March Against Child Abuse national campaign in New York City

A big thank you goes out to everyone who attended the National Child Abuse Awareness Day on Monday’s Press Conference on the Steps of City Hall 260 Broadway in New York, New York. It was once again a step closer to helping our children and young adults get the care they need. Showing your support helps us survivors know that the long term fight is worth it. A special Thanks to the people who are involved and are signed onto our team;

“With more than 3 million cases of child abuse reported in 2011, this is a public health crisis,” stated Patrick Donohue, father of Sarah Jane Donohue and founder of SJBF. “It is critical we work together to prevent, identify, treat and eventually cure the victims of abusive head trauma/shaken baby syndrome and other forms of child abuse. We are very grateful to the police, district attorneys, politicians, doctors and other allied health professionals who devote their lives to protect our most vulnerable citizens, our children.”

"I am proud to stand by The Sarah Jane Brain Foundation and its important mission to raise awareness about child abuse and infant head trauma,” stated Representative Charles Rangel of New York’s 13th Congressional District. “We must work together to prevent future cases of child abuse, and to make sure that we invest the time and resources necessary to fully rehabilitate children who have already suffered from childhood trauma."

“Each year, millions of children become victims of abuse. As the leaders of tomorrow, it is our responsibility to provide a safe environment for all children to live, play, and learn. The future of our civil society depends on our ability to take a stand against child abuse today and every day,” stated Representative Yvette D. Clarke of New York’s 9th Congressional District.

"Fighting child abuse-- including infant head trauma and shaken baby syndrome-- is a cause all Americans can support, and I am proud to stand with them," said Representative Carolyn B. Maloney of New York’s 12th Congressional District. "It's vital that we raise the profile of this crucial public health issue, and National Child Abuse Awareness Day does just that."

"As the father of six beautiful children myself, I believe that it is very important that we stand together in solidarity with all the young people who have suffered from child abuse,” said Rev. Erick Salgado. “I will continue to fight for tougher child abuse laws in New York State and promote programs that will help prevent child abuse. Any parents who believe they need help in taking care of their children should immediately seek help from either a government or non-profit agency. Child abuse must never be an option."

“Tragedies like Nixmary Brown and Marchella Pierce have awakened this city to the need for real change and the way we protect vulnerable children. It’s our job as adults to shelter our children from all preventable harm like child abuse,” said Public Advocate Bill de Blasio. “We need to treat every incident of abuse or neglect as preventable. We need to apply every tool of government and every community resource to the goal of preventing harm to our kids. I applaud Sarah Jane Brain Foundation for its powerful advocacy.”

“Child abuse is a tragedy, and groups like The Sarah Jane Brain Foundation provide invaluable insight for policymakers in helping prevent all forms of abuse and neglect. And as victims recover, their families need seamless treatment as well as support from their schools and communities. They can’t go it alone, and they shouldn’t have to,” said New York City Comptroller John C. Liu.

“Child abuse is not an American problem, it is a global public health crisis,” said Dr. Maliheh Mohamadpour, Director of International Projects at SJBF. “Recent studies in Brazil, Chile, Egypt, India, Philippines and the U.S. showed physical punishment was used in at least 55% of families and harsh physical discipline ranged from a low of 1% in the U.S. to 2.3% in Brazil, 4.5% in Chile, 9.9% in Philippines, 28% in Egypt and in some areas of India up to 39%. These staggering numbers highlight the need to develop a Pediatric Acquired Brain Injury Plan (PABI Plan) all over the world and the Sarah Jane Brain Foundation is working to achieve this goal.”

Many leaders gathered on the steps of City Hall in New York City on Monday morning, April 22, 2013, as part of the national awareness campaign. Those who joined Sarah Jane and her father included representatives from all 5 District Attorneys offices of New York City and the New York City Police Department: Joseph Muroff, Bureau Chief, Child Abuse and Sex Crimes, Bronx County DA’s office, Miss Gregory, Exec. ADA, Crimes Against Children, Kings County DA’s office, Robert Hettleman, Chief, Child Abuse Unit, New York County DA’s office, Leigh Bishop, Sr. ADA, Special Victims Bureau, Queens County DA’s office, Yolanda Rudich, Bureau Chief, Special Victims Bureau, Richmond County DA’s office and Michael Keenan, Commanding Officer, Manhattan Child Abuse Squad, New York City Police Department.

About The Sarah Jane Brain Foundation: For more information, please read Patrick’s letter to Sarah Jane when she turned five:

Craig Sears
National Advisory Board Family
The Sarah Jane Brain Foundation
651 West 169th Street, Suite 42,
New York, New York 10032