A Voice for Traumatic Brain Injury

Living with a Traumatic Brain Injury

2012-02-12T12:27:00.000-05:00

For years, I felt as though no one else knew what I was going through, but believe me, Traumatic Brain injury survivors TBI almost ALWAYS experience the same things DON’T “EVER” GIVE UP, KEEP IT SIMPLE & EZ DUZ IT please know "You Are Not Alone"

“Someday everything will all make perfect sense. So for now, laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason.”

So make peace with your past, enjoy your present, and hope for your future!

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

2011-11-20T13:28:00.001-05:00

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

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

Some of the highlights of the support the PABI Plan Act (HR 2600) has generated include:
• The most conservative Member of the House, Rep. Mike Pence (R-IN) and the most liberal Member of the House, Rep. Tammy Baldwin (D-WI)
• Five Republican Committee Chairs: Reps. Buck McKeon (R-CA, Chair-Armed Services), Peter King (R-NY, Chair-Homeland Security), Spencer Bachus (R-AL, Chair-Financial Services), Ralph Hall (R-TX, Chair-Science) and Jo Bonner (R-AL, Chair-Ethics) as well as six Ranking Democrats: Reps. Barney Frank (D-MA, Ranking-Financial Services), Howard Berman (D-CA, Ranking-Foreign Affairs), Bob Brady (D-PA, Ranking-Administration), Ed Markey (D-MA, Ranking-Natural Resources), Nick Rahall (D-WV, Ranking-Transportation) and Eddie Bernice Johnson (D-TX, Ranking-Science)
• The Chair of the National Republican Congressional Committee, Rep. Pete Sessions (R-TX) and the Chair of the Democratic Congressional Campaign Committee, Rep. Steve Israel (D-NY)
• Broad-based, bi-partisan support in the Energy and Commerce Committee: Reps. Michael Burgess (R-TX), Marsha Blackburn (R-TN), Bob Latta (R-OH), Cathy McMorris-Rodgers (R-WA), Gregg Harper (R-MS), Leonard Lance (R-NJ), David McKinley (R-WV), Brian Bilbray (R-CA), Adam Kinzinger (R-IL) and Reps. Edolphus Towns (D-NY), Bobby Rush (D-IL), Michael Doyle (D-PA), Tammy Baldwin (D-WI), Mike Ross (D-AR), John Barrow (D-GA), Ed Markey (D-MA)
• GOP Freshmen Members: Reps. Blake Farenthold (R-TX), Stephen Fincher (R-TN), Mike Fitzpatrick (R-PA), Tim Griffin (R-AR), Michael Grimm (R-NY), Frank Guinta (R-NH), Nan Hayworth (R-NY), Joe Heck (R-NV), Bill Johnson (R-OH), Adam Kinzinger (R-IL), David McKinley (R-WV), Patrick Meehan (R-PA), Jon Runyan (R-NJ), Steven Palazzo (R-MS), Allen West (R-FL)
•
Co-sponsors of HR2600 as of November 18, 2011: Baca, Joseph N. “Joe” [CA-43], Bachus, Spencer [AL-6], Baldwin, Tammy [WI-2], Barrow, John [GA-12], Berman, Howard [CA-28], Bilbray, Brian [CA-50], Bishop, Sanford [GA-2], Blackburn, Marsha [TN-7], Blumenauer, Earl [OR-3], Bonner, Jo [AL-1], Brady, Robert A. [PA-1], Brown, Corrine [FL-3], Burgess, Michael C. [TX-26], Burton, Dan [IN-5], Capito, Shelley Moore [WV-2], Carnahan, Russ [MO-3], Carson, Andre [IN-7], Clarke, Hansen [MI-13], Connolly, Gerald E. "Gerry" [VA-11], Crenshaw, Ander [FL-4], Davis, Danny K. [IL-7], Diaz-Balart, Mario [FL-21], Doyle, Michael F. [PA-14], Farenthold, Blake [TX-27], Fincher, Stephen [TN-8], Fitzpatrick, Mike [PA-8], Frank, Barney [MA-4], Fudge, Marcia L. [OH-11], Gallegly, Elton [CA-24], Green, Al [TX-9], Griffin, Tim [AR-2], Grijalva, Raul M. [AZ-7], Grimm, Michael G. [NY-13], Guinta, Frank [NH-1], Hall, Ralph [TX-4], Harper, Gregg [MS-3], Hayworth, Nan A.S. [NY-19], Heck, Joseph J. [NV-3], Heinrich, Martin [NM-1], Himes, James A. [CT-4], Israel, Steve [NY-2], Jackson Lee, Sheila [TX-18], Jackson, Jesse L., Jr. [IL-2], Johnson, Bill [OH-6], Johnson, Eddie Bernice [TX-30], Johnson, Hank [GA-4], Jones, Walter [NC-3], Kildee, Dale E. [MI-5], King, Peter T. [NY-3], Kinzinger, Adam [IL-11], Kissell, Larry [NC-8], Langevin, Jim [RI-2], Larson, John B. [CT-1], Latham, Thomas “Tom” [IA-4], Latta, Robert [OH-5], Lewis, John [GA-5], Loebsack, David [IA-2], Maloney, Carolyn B. [NY-14], Markey, Ed [MA-7], McCotter, Thad [MI-11], McGovern, James P. [MA-3], McIntyre, Mike [NC-7], McKeon, Howard P. "Buck" [CA-25], McKinley, David B. [WV-1], McMorris Rodgers, Cathy [WA-5], Meehan, Patrick [PA-7], Michaud, Michael [ME-2], Miller, Brad [NC-13], Moran, James P. [VA-8], Norton, Eleanor Holmes [DC], Palazzo, Steven M. [MS-4], Payne, Donald M. [NJ-10], Pence, Mike [IN-6], Rahall, Nick [WV-3], Rangel, Charles B. [NY-15], Reed, Tom [NY-29], Richardson, Laura [CA-37], Rivera, David [FL-25], Ross, Mike [AR-4], Runyan, Jon [NJ-3], Rush, Bobby L. [IL-1], Ryan, Tim [OH-17], Schiff, Adam B. [CA-29], Schmidt, Jean [OH-2], Schock, Aaron [IL-18], Sessions, Pete [TX-32], Sires, Albio [NJ-13], Stivers, Steve [OH-15], Thompson, Glenn [PA-5], Tiberi, Patrick J. [OH-12], Tierney, John [MA-6], Tonko, Paul [NY-21], Towns, Ed [NY-10], Tsongas, Niki [MA-5], Turner, Robert L. [NY-9], Walz, Timothy [MN-1], West, Allen [FL-22], Yarmuth, John A. [KY-3], Young, Don [AK]; Primary Sponsor: Lance, Leonard [NJ-7]

I wish you all a Happy and Safe Thanksgiving

Craig Sears
The Sarah Jane Brain Foundation
International Advisory Board
339 5th Avenue - Suite 405
New York, NY 10016
212.576.1180
www.TheBrainProject.org

Iraq and Afghanistan Veterans of America' Endorse PABI Plan Act

2011-10-18T19:37:00.001-04:00

Largest Veterans Organization for Vets of Iraq and Afghanistan Wars Supports Bill to Implement The National Pediatric Acquired Brain Injury Plan (PABI Plan)

New York, NY – Iraq and Afghanistan Veterans of America (IAVA), the nation’s first and largest nonprofit, nonpartisan organization for veterans of the wars in Iraq and Afghanistan, announced its support for HR 2600, the PABI Plan Act. HR 2600 will be the largest national initiative dealing with the #1 leading cause of death and disability for American children and young adults up to 25 years of age: brain injury. More than half of our veterans returning from war with traumatic brain injury are under the age of 25 and will be included in this national initiative. HR 2600 was introduced by Congressman Leonard Lance (NJ-7) and is co-sponsored by over 90 bi-partisan colleagues.

“As of August 2011, 952,132 service members aged 24 and below had served in Iraq and Afghanistan. Many people are surprised to learn that these physically strong and mature veterans have brains that are still developing and medically considered pediatric,” stated IAVA Founder and Executive Director Paul Rieckhoff in his letter of support.

“As unlikely as it would seem, a young SEAL or Marine with a Traumatic Brain Injury (TBI) can potentially benefit from the same research and treatment as an infant victim of Shaken Baby Syndrome or a teenager with a TBI from an auto accident,” Mr. Rieckhoff continued.

“Developing a seamless, standardized, evidence-based system of care to prevent, identify and treat brain injuries is a national obligation to our young military families,” said Congressman Lance. “The PABI Plan Act will accomplish this mission for these young heroes and other American youth suffering from the number one leading cause of death and disability, brain injury.”

“As with every American, we are indebted for the incredible work Iraq and Afghanistan Veterans of America does every day to support the families of our bravest Americans,” said Patrick Donohue, Founder of The Sarah Jane Brain Foundation. “We are equally grateful for their support of HR 2600 and encouragement to implement the National Pediatric Acquired Brain Injury Plan (PABI Plan).”

Iraq and Afghanistan Veterans of America (www.IAVA.org) is the country’s first and largest nonprofit, nonpartisan organization for veterans of the wars in Iraq and Afghanistan and has more than 200,000 Member Veterans and civilian supporters nationwide. Its mission is to improve the lives of this country’s newest generation of veterans and their families. To read the complete letter of support from IAVA please visit: www.TheBrainProject.org/IAVAendorsesHR2600.php.

H.R. 2600 would create a national network of 52 State Lead Centers of Excellence, one for every state plus the District of Columbia and Puerto Rico, with the responsibility of implementing the PABI Plan based on their own state's unique demographics, geography, laws, infrastructure, financing and causes of brain injuries without duplicating current practices. The legislation will cover the entire continuum of care from prevention, treatment in acute medical facilities, reintegration back into the schools, communities and homes and then transitioning into an adult system of greater independent living.

The legislation will also focus on individuals with a "mild" traumatic brain injury which accounts for more than 80 percent of brain injuries each year, commonly referred to as concussions, as well as rural communities which account for 25 percent of the population and have higher incidence rates of brain injuries. For example, the 52 State Lead Centers would help children suffering from sports-related injuries by providing additional information, resources and care. The PABI Plan covers all acquired brain injuries from birth through 25 years of age while the brain is still in its developmental stages, which includes more than half of the young veterans returning from war with a brain injury.

H.R. 2600 is the largest initiative in American history focusing on pediatric acquired brain injury, however, it was written so it does not create any new federal agency, it does not create any new federal positions and it does not increase the federal budget. It was also written so the federal commitment will sunset at the end of seven years.

According to the Centers for Disease Control, more than 765,000 American youth aged 25 and younger enter an emergency department every year with a new traumatic brain injury. More than 80,000 are hospitalized and over 11,000 die annually. For more information about the PABI Plan or the Sarah Jane Brain Foundation please visit www.TheBrainProject.org/lettertosarahjane.php.

HR 2600 already has over 90 bi-partisan co-sponsors including: Baca, Joseph N. “Joe” [CA-43], Bachus, Spencer [AL-6], Baldwin, Tammy [WI-2], Barrow, John [GA-12], Berman, Howard [CA-28], Bilbray, Brian [CA-50], Bishop, Sanford [GA-2], Blackburn, Marsha [TN-7], Blumenauer, Earl [OR-3], Bonner, Jo [AL-1], Brady, Robert A. [PA-1], Brown, Corrine [FL-3], Burgess, Michael C. [TX-26], Burton, Dan [IN-5], Capito, Shelley Moore [WV-2], Carnahan, Russ [MO-3], Carson, Andre [IN-7], Connolly, Gerald E. "Gerry" [VA-11], Crenshaw, Ander [FL-4], Davis, Danny K. [IL-7], Diaz-Balart, Mario [FL-21], Doyle, Michael F. [PA-14], Fincher, Stephen [TN-8], Fitzpatrick, Mike [PA-8], Frank, Barney [MA-4], Fudge, Marcia L. [OH-11], Gallegly, Elton [CA-24], Griffin, Tim [AR-2], Grijalva, Raul M. [AZ-7], Grimm, Michael G. [NY-13], Guinta, Frank [NH-1], Hall, Ralph [TX-4], Harper, Gregg [MS-3], Heinrich, Martin [NM-1], Himes, James A. [CT-4], Israel, Steve [NY-2], Jackson Lee, Sheila [TX-18], Jackson, Jesse L., Jr. [IL-2], Johnson, Bill [OH-6], Johnson, Eddie Bernice [TX-30], Johnson, Hank [GA-4], Jones, Walter [NC-3], Kildee, Dale E. [MI-5], King, Peter T. [NY-3], Kissell, Larry [NC-8], Langevin, Jim [RI-2], Larson, John B. [CT-1], Latham, Thomas “Tom” [IA-4], Latta, Robert [OH-5], Lewis, John [GA-5], Loebsack, David [IA-2], Maloney, Carolyn B. [NY-14], Markey, Ed [MA-7], McCotter, Thad [MI-11], McGovern, James P. [MA-3], McIntyre, Mike [NC-7], McKeon, Howard P. "Buck" [CA-25], McKinley, David B. [WV-1], McMorris Rodgers, Cathy [WA-5], Meehan, Patrick [PA-7], Michaud, Michael [ME-2], Miller, Brad [NC-13], Moran, James P. [VA-8], Norton, Eleanor Holmes [DC], Palazzo, Steven M. [MS-4], Payne, Donald M. [NJ-10], Pence, Mike [IN-6], Rahall, Nick [WV-3], Rangel, Charles B. [NY-15], Reed, Tom [NY-29], Richardson, Laura [CA-37], Rivera, David [FL-25], Ross, Mike [AR-4], Runyan, Jon [NJ-3], Rush, Bobby L. [IL-1], Ryan, Tim [OH-17], Schiff, Adam B. [CA-29], Schock, Aaron [IL-18], Sessions, Pete [TX-32], Sires, Albio [NJ-13], Stivers, Steve [OH-15], Thompson, Glenn [PA-5], Tiberi, Patrick J. [OH-12], Tierney, John [MA-6], Tonko, Paul [NY-21], Towns, Ed [NY-10], Walz, Timothy [MN-1], West, Allen [FL-22], Yarmuth, John A. [KY-3], Young, Don [AK]; Primary Sponsor: Lance, Leonard [NJ-7]

H.R.2600: National Pediatric Acquired Brain Injury Plan Act of 2011

2011-08-06T13:32:00.000-04:00

Dear Congressman/woman: August, 2011

My name is Craig Sears, and I am a Survivor of a Traumatic Brain Injury. I am writing on behalf of the Sarah Jane Brain Foundation to thank you for co-sponsoring HR 2600, also known as The National Pediatric Acquired Brain Injury Plan Act of 2011. I applaud you for being a co-sponsor of this critically important groundbreaking legislation. I am adding support to the goal of creating a national model care system for children suffering from all Pediatric Acquired Brain Injuries, helping to protect the children of tomorrow from ever having to experience the horror and heartache of traumatic brain injury. This legislation will also help the thousands of troops returning from Iraq and Afghanistan with the “signature wound” of these conflicts – TBI.

My advocacy started as means to overcome my own difficulties. It's become my mission to make sure that no one else has to go through what I have. This is my personal experience about what happens when brain injury goes untreated...

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

And in a heartbeat, it was all gone. Suddenly, I came up over a hill, and there was a car going the wrong way. It was too late. I couldn't stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I landed head first into a curb, 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 (TBI). That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died.

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

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

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

Eventually, a sympathetic ear at the Connecticut Governor's office helped arrange a meeting between my family, my doctors, and a state representative. I told them all, I wanted out, I needed out. And it was clear to them that I was right. But where was I to go?

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

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

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

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

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

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

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

Everything I had long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often, ending up in shelters, local lockups, and numerous mental health facilities all over the state. Why? Because there was no help for TBI survivors, I continued to spiral down, and soon I wound up homeless, and not long after that, in prison.

The police, the court, the judge and the law, didn't know, care or consider TBI, or the fact that I had one. And once behind bars, neither did the warden. I served 5 years for what other people would sleep off overnight in the local lockup, and then clear up with a brief court appearance. Instead, I ended up inside a level four, high security prison, surrounded by gang members, rapists, killers, and child molesters. I was locked in a 9'x12' cell twenty-four hours a day with a vicious inmate next to me.

While behind bars, I received absolutely no help for my disabilities. There was no early release, or time off for good behavior from my sentence. TBI or not, I served every measure of that sentence to the fullest. And I suffered regularly the indignities associated with such an environment that common decency prevents me from sharing here. It was hell.

Somehow, I survived to be released in 2003. And again I needed a place to call home. After 20 years of waiting and being turned down, I turned to a local Congressman's office for help. Within 2 months, they cut through the red tape, and I finally received recognition of my TBI. And I was accepted into a HUD Section 8 housing unit.

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

Due to my injury I have memory problems, speech problems, balance issues and many other things. I am disabled because of this and receive services from the state which enable me to remain in the community instead of in a nursing home, in prison or on the streets.

However, August 29, 2009, the State of Connecticut wrongly took away those services, without reason or notice. Fortunately I am a strong advocate for myself and after many phone calls, including to my Congressman's office (Congressman Jim Himes), I was able to have them reinstate my services – but not without cost to me as I went for so long without getting the services I needed. It also brought to my attention the sad state of the system as it currently exists - it is designed to take advantage of people with disabilities. Another person with a TBI in my shoes would likely not have had the ability to advocate for themselves as I did, and without services they would not have anybody else willing to do it on their behalf. This is a very disturbing situation and it shows how easy it is for states to discriminate against and take advantage of someone like me - it's like taking candy from a baby!

The National Pediatric Acquired Brain Injury Plan (PABI Plan) develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of families who have a child or young adult suffering the leading cause of death and disability for American youth: brain injury.

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

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

The plan calls for each of these 52 State Lead Centers of Excellent to have case managers specially trained to assist children and young adults with brain injuries. If the National PABI Plan were in place, that case manager would have stepped in during my crisis and been my advocate. These people would be trained to help those who cannot help themselves. Imagine what would have happened to someone else in my same shoes who did not know to contact the people that I contacted to get my services back! They would have not gotten them reinstated and would have ended up on the streets or in prison or dead, that's what.

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

According to the Centers for Disease Control, more than 765,000 American youth aged 25 and younger enter an emergency department every year with a new traumatic brain injury. More than 80,000 are hospitalized and over 11,000 die annually. This Act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries.

This is why the goal and mission of the Sarah Jane Brain Foundation are so very important. For myself, I wish on that July afternoon over 20 years ago, that there was a National Pediatric Acquired Brain Injury Plan in place for me. I wish that the State, doctors, and nurses, and all the cops, judges, and people whoever had the power over me had a clue about Traumatic brain injury. I wish that when I needed it, there were people to turn to, answers to the questions I didn’t even know I had, and the resources in place for me. I wonder how different my life would be today.

The United States calls July 4th Independence Day. As a Brian injury survivor I know first hand what its like to have lost my independence. The day this is signed into law I call it Independence Day across the Nation for Brian injury survivors and their families. Thank you to everyone that has been involved in this history making moment for brain injury.

Sincerely,

Craig Sears,

A Voice for Traumatic Brain Injury

Sponsor: Rep Lance, Leonard [NJ-7] (introduced 7/20/2011)
Committees: House Energy and Commerce
Latest Major Action: 7/20/2011 Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.

Cosponsors
Rep Bachus, Spencer [AL-6] - 7/25/2011 Rep Baldwin, Tammy [WI-2] - 7/20/2011 Rep Barrow, John [GA-12] - 7/20/2011 Rep Berman, Howard L. [CA-28] - 7/27/2011 Rep Blackburn, Marsha [TN-7] - 7/20/2011 Rep Blumenauer, Earl [OR-3] - 7/20/2011 Rep Bonner, Jo [AL-1] - 7/20/2011 Rep Brady, Robert A. [PA-1] - 7/20/2011 Rep Brown, Corrine [FL-3] - 7/20/2011 Rep Burgess, Michael C. [TX-26] - 7/20/2011 Rep Burton, Dan [IN-5] - 7/20/2011 Rep Capito, Shelley Moore [WV-2] - 7/20/2011 Rep Carson, Andre [IN-7] - 7/20/2011 Rep Connolly, Gerald E. "Gerry" [VA-11] - 7/20/2011 Rep Crenshaw, Ander [FL-4] - 7/25/2011 Rep Davis, Danny K. [IL-7] - 7/25/2011 Rep Diaz-Balart, Mario [FL-21] - 7/27/2011 Rep Doyle, Michael F. [PA-14] - 7/20/2011 Rep Fincher, Stephen Lee [TN-8] –7/27/2011 Rep Frank, Barney [MA-4] - 7/20/2011 Rep Fudge, Marcia L. [OH-11] - 7/20/2011 Rep Gallegly, Elton [CA-24] - 7/20/2011 Rep Griffin, Tim [AR-2] - 7/27/2011 Rep Grijalva, Raul M. [AZ-7] - 7/20/2011 Rep Grimm, Michael G. [NY-13] - 7/20/2011 Rep Harper, Gregg [MS-3] - 7/20/2011 Rep Himes, James A. [CT-4] - 7/20/2011 Rep Israel, Steve [NY-2] - 7/25/2011Rep Jackson Lee, Sheila [TX-18] - 7/20/2011 Rep Jackson, Jesse L., Jr. [IL-2] -7/20/2011 Rep Johnson, Henry C. "Hank," Jr. [GA-4] - 7/27/2011 Rep Kildee, Dale E. [MI-5] - 7/20/2011 Rep King, Peter T. [NY-3] - 7/20/2011 Rep Kissell, Larry [NC-8] - 7/20/2011 Rep Langevin, James R. [RI-2] - 7/25/2011 Rep Larson, John B. [CT-1] - 7/20/2011 Rep Latta, Robert E. [OH-5] - 7/27/2011 Rep Lewis, John [GA-5] - 7/25/2011 Rep Maloney, Carolyn B. [NY-14] - 7/20/2011 Rep McGovern, James P. [MA-3] - 7/20/2011 Rep McKeon, Howard P. "Buck" [CA-25] - 7/20/2011 Rep McKinley, David B. [WV-1] - 7/20/2011 Rep McMorris Rodgers, Cathy [WA-5] - 7/20/2011 Rep Meehan, Patrick [PA-7] - 7/20/2011 Rep Michaud, Michael H. [ME-2] - 7/25/2011 Rep Miller, Brad [NC-13] - 7/20/2011 Rep Moran, James P. [VA-8] - 7/20/2011 Rep Norton, Eleanor Holmes [DC] - 7/20/2011 Rep Payne, Donald M. [NJ-10] - 7/20/2011 Rep Pence, Mike [IN-6] - 7/20/2011 Rep Rahall, Nick J., II [WV-3] - 7/27/2011 Rep Rangel, Charles B. [NY-15] - 7/20/2011 Rep Richardson, Laura [CA-37] - 7/20/2011 Rep Ross, Mike [AR-4] - 7/20/2011 Rep Runyan, Jon [NJ-3] - 7/20/2011 Rep Rush, Bobby L. [IL-1] - 7/20/2011 Rep Ryan, Tim [OH-17] - 7/20/2011 Rep Schiff, Adam B. [CA-29] - 7/20/2011 Rep Sessions, Pete [TX-32] - 7/20/2011 Rep Sires, Albio [NJ-13] - 7/20/2011 Rep Tiberi, Patrick J. [OH-12] - 7/20/2011 Rep Towns, Edolphus [NY-10] - 7/27/2011 Rep Yarmuth, John A. [KY-3] - 7/20/2011

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

2011-07-24T13:42:00.001-04:00

WASHINGTON, D.C. -- One Wilton resident called it "Independence Day for brain injury survivors."

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

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

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

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

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

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

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

"This is an historic day for the millions of American youth who suffer from the number one leading cause of death and disability -- brain injury -- as well as their families," Donohue said. "This bill, backed by Congressman Lance, Congressman Jim Himes (Connecticut, D-4), for whom we are very grateful he became an original sponsor, and others, would ensure families won't have to reinvent the wheel when their child is impacted with a brain injury."

Donohue also praised Sears -- who suffered his traumatic brain injury 21 years when he was thrown from his motorcycle -- for his persistence in pushing this issue to the highest levels of government.

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

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

Sears drew inspiration from Donohue as he watched the father take care of Sarah Jane the last three-plus years as they fought for this act side by side.

"To be very honest I'm at a loss for words," Sears said. "Patrick is a role model for every parent in the world. He's a prime example for every parent in the world. I've been traveling with him for the last three-and-a-half years, and I admire him like you wouldn't believe. I can't hope to wonder how different my life would be today if this act was in place 21 years ago."

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

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

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

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

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

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

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

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

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

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

The historic National Pediatric Acquired Brain Injury Plan Act to be introduced Wednesday

2011-07-19T10:03:00.000-04:00

Come join Sarah Jane and Craig Sears on Capitol Hill in DC Wed 7/20/2011 at 2pm w/a bi-partisan group of Members of Congress to announce the historic PABI Plan Act which will be the largest national initiative to develop a seamless, standardized, evidence-based system of care that is universally accessible for the millions of American families that have a child/young adult w/ a brain injury! (Email ted@thebrainproject.org for details)

The largest healthcare collaboration in U.S. history dealing with PABI

2011-07-07T10:17:00.001-04:00

National Pediatric Acquired Brain Injury Act was introduced in Congress

In Photos: Patrick Donohue, Congressman Leonard Lance, Craig Sears, Sarah Jane Donohue

As a member of the Sarah Jane Brain Foundation National Advisory Board – Family I am pleased to report that Congressman Leonard Lance (NJ-7) announced federal legislation to implement the National Pediatric Acquired Brain Injury Plan (PABI Plan) at Overlook Medical Center on Thursday, June 30, 2011. Joining Congressman Leonard Lance Barbara Geiger-Parker (CEO of the Brain Injury Association of New Jersey) Alan Leiber (CEO of Overlook Medical Center) Patrick Donohue and his six-year-old daughter Sarah Jane the namesake of the Sarah Jane Brain Foundation, along with Traumatic Brain Injury Survivor Craig Sears and other families’ advocates and professionals

The National Pediatric Acquired Brain Injury Plan (PABI Plan) develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of families who have a child or young adult suffering the leading cause of death and disability for American youth: brain injury.

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

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

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

According to the Centers for Disease Control, more than 765,000 American youth aged 25 and younger enter an emergency department every year with a new traumatic brain injury. More than 80,000 are hospitalized and over 11,000 die annually.
During a news conference at Overlook Medical Center, Barbara Geiger-Parker, president and CEO of the Brain Injury Association of New Jersey, and other community leaders discussed their support for Lance’s legislation.

This Act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries. We applaud Congressman Lance for being the lead sponsor of this critically important groundbreaking legislation, said Barbara Geiger-Parker, president and CEO of the Brain Injury Association of New Jersey.

This is a historic day for the millions of American youth who suffer from the number one leading cause of death and disability, brain injury, as well as their families. Congressman Lance’s bill would ensure families won’t have to reinvent the wheel when their child is impacted with a brain injury, said Patrick Donohue the founder of The Sarah Jane Brain Foundation.

Being a Brain Injury survivor I know first hand how awful it is to have lost my independence!

For myself, I wish on that July afternoon 20 + years ago, that there was a national PABI plan in place. I wish that the States, 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 day this is signed into law I call it Independence Day across the Nation for Brian injury survivors.

Thank you to everyone that has been involved in this history making moment.

Sincerely,

Craig Sears

www.thebrainproject.org

The Sarah Jane Brain FOUNDATION
339 Fifth Avenue – Suite 405
New York, NY 10016
(212) 576-1180
www.TheBrainProject.org

Patrick B. Donohue, Esq., Founder
patrick@thebrainproject.org

About Pediatric Acquired Brian Injury (PABI)
Pediatric Acquired Brian Injury (PABI) is an injury to a developing brain from birth through 25 years of age caused by either trauma (motor vehicle crashes, abusive head trauma also known as shaken baby syndrome, sports-related concussions, falls, gun shot wounds, blast injury from was) or non-trauma (strokes, brain tumors, meningitis, seizures, etc…). PABI is the #1 leading cause of death and disability for American youth with over (traumatic brain injury), basically once every 40 seconds. Over 80,000 of these American youth are hospitalized and over 11,000 die every year and these numbers do not take into account the number of unidentified traumatic brain injuries. (likely 2-3 times the reported number) nor the smaller number of non-traumatic acquired brain injuries. To put the numbers into context, to put the numbers into context, there are about 56,000 new cases of HIV every year and about 24,000 new cases of autism every year. The federal government spends over $3.5 Billion annually in HIV/Aids specific research is finally moving towards $1 Billion annually in autism specific research (long overdue) while spending less than $10 MILLION in PABI specific research!

About The National Pediatric Acquired Brian Injury Plan (PABI)
The Sarah Jane Brain foundation was founded by Patrick Donohue and is named his six-year-old
daughter, Sarah Jane, who was violently shaken by her baby nurse when she was just five days old, breaking four ribs, both collarbones and causing a severe brain injury. The international Advisory Board of the Sarah Jane Brain Foundation created the first-ever National Pediatric Acquired Brian Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of American families who have a child or young adult with an acquired brain injury. The PABI Plan has the support of the American Academy of Pediatric, the American Academy of Cerebral Palsy and Developmental Medicine, the American Academy of Neurology as well as many other professional and family organizations. To learn how the PABI Plan was developed please read Patrick’s letter to Sarah Jane when she turned five: www.TheBrainProjecy.org/lettertosarahjane.php.

The SJBF Advisory Board recognized there is no one single federal plan that fits every state since each state had its own unique demographics, geography, laws, infrastructure, financing as well as different incidence rates for different causes (i.e., more near drowning in Florida than Montana and more skiing- related concussions in Colorado than Texas).The PABI Plan establishes a state-by-state plan with each state having a SJBF State Lead Center of Excellence to develop its own statewide master PABI Plan.
Therefore, the PABI Plan establishes a national structure to provide complete national coverage with the ability to standardize the system of care while still providing the flexibility for each state to have its own pathways to universal accessibility. This network of 52 institutions serve as SJBF State Lead Centers of Excellence, one for each state plus District of Columbia and Puerto Rico. Each State Lead Center will work through and within the existing structures within their state, while helping to build capacity of these structures to provide complete coverage to these children/young adults and their families. They will not duplicate current services and create further fragmentation within each state.

The PABI Plan is developed along the continuum of care and divided into seven Categories of Care:
1) Prevention; 2) Acute Care; 3) Reintegration and long-term care; 4) Adult Transition; 5) “mild” Traumatic Brain Injury; 6) Rural/Tele-health; and 7) The Virtual Center of Care.

Each SJBF State Lead Center of Excellence has three primary responsibilities: 1) Develop a statewide master PABI Plan; 2) Provide a specialized case management system for the children/young adults and their families; and 3) Each State Lead Center will have a regional or national leadership role in one of the seven Categories of Care. The implementation of the PABI Plan will create over 6,000 jobs across every state or territory in the country.

The Sarah Jane Brain Foundation 52 State lead center of Excellence
The country was divided into seven regions with seven or eight states/territories per region:
Northeast: CT (Yale-New Haven Children’s Hospital), MA (Children’s Hospital Boston/Harvard Medical School), ME (Maine Institute of Human Genetics and Health), NH (Dartmouth Medical School), NY (Mount Sinai Medical Center), RI (Hasbro Children’s Hospital Child Protection Program), VT (The Vermont Center for Children, Youth and Families at the University of Vermont.
Middle-Atlantic: DE (Nemours/Alfred I. duPont Hospital for Children) DC (Children’s National Medical Center),
MD (Kennedy Krieger Institute/Johns Hopkins University), NJ (Brain Injury Association of New Jersey), PA (Children’s Hospital of Pittsburgh of UPMC), VA (Kluge Children’s Rehabilitation Center/University of Virginia Children’s Hospital), WV (West Virginia Brian Injury Association)
Southeast: AL (The University of Alabama at Birmingham/The Children’s Hospital of Alabama), FL (University of Miami Miller School of Medicine), GA (Children’s Healthcare of Atlanta), MS (Children’s Rehabilitation Services/Blair E. Batson Hospital for Children). NC (The Clinical Center for the Study of Development and Learning/ University of North Carolina School of Medicine), PR (Puerto Rico Medical Center/ University of Puerto Rico), SC (Medical University of South Carolina), TN (University of Tennessee)
Mid-Central: KY (University of Kentucky Hospital), IN (James Whitcomb Riley Hospital for Children), IL (The University of Illinois at Chicago), MI (Michigan Public Health Institute/Brain Injury Association of Michigan), MN (Mayo Clinic), OH (Cincinnati Children’s Hospital Medical Center), WI (Children’s Hospital of Wisconsin)
South-Central: AR (University of Arkansas for Medical Sciences), IA (University of Iowa Children’s Hospital/Center for Disabilities and development and Child Health Specialty Clinics). KS (Center for Child Health and Development/ University of Kansas Medical Center), LA (Louisiana Health Care Quality Forum), MO (St. Louis Children’s Hospital), NE (Madonna Rehabilitation Hospital), NM (University of New Mexico School of Medicine), OK (Oklahoma State University/Center for health sciences), TX (The University of Texas at Dallas/Center for BrainHealth)
Rocky Mountain: CO (The Children’s Hospital at Aurora), ID (Idaho State University/Institute of Rural Health), MT (Montana State University at Billings/Montana center on Disabilities), ND (North Dakota State University), SD (Center for Disabilities/Sanford School of Medicine of The University of South Dakota), UT (University of Utah), WY (Brain Injury Association of Wyoming)
Pacific: AK (Children’s Hospital at Providence), AZ (Barrow Neurological Institute/St. Joseph Hospital and Medical Center), CA (Mattel Children’s Hospital/UCLA), HI (Center on Disability Studies at The University of Hawaii), NV (Sunrise Children’s Hospital), OR (Teaching Research Institute/Western Oregon University), WA (University of Washington Harborview Medical Center)
For a detailed breakdown of the PABI Plan please visit: www.TheBrainProjest.org/

During the 111th Congress, over 100 Members endorsed the PABI Plan by serving as a Co-Sponsor of H, Con. Res. 198 which stated, “The Congress---
1) Recognizes that Pediatric Acquired Brain Injury (PABI) is the leading cause of death and disability in the United States for children and young adults from birth up to 25 years of age;
2) Endorses the National Pediatric Acquired Brian Injury Plan as the Method to prevent future PABIs and treat all children and young adults suffering from a PABI while supporting their families; and
3) Encourages all Federal, Stat and local governments to implement the PABI Plan.”

The following 110 Members signed on as Co-Sponsors of H. Con. Res. 198 in the 111th Congress:
Abercrombie, Neil; Baldwin, Tammy; Barrow, John; Bishop, Sanford D., Jr.; Blackburn, Marsha; Blumenauer, Earl; Bonner, Jo; Brown, Corrine; Brown, Henry E., Jr.; Brown-Waite, Ginny; Burgess, Michael C., Buyer, Steve; Calvert, Ken; Camp, Dave; Carnahan; Russ; Carney, Christopher P.; Castle, Michael N.; Chandler, Ben; Christensen, Donna M.; Clarke, Yvette D.; Cleaver, Emanuel; Chen, Steve; Connolly, Gerald E. “Gerry”; Costello, Jerry F.; Courtney, Joe; Cuellar, Henry; Cummings, Elijah E., DeGette, Diana; Delahunt, Bill; Diaz-Balart, Lincoln; Forbes, J. Randy; Foster, Bill; Frank, Barney; Fudge; Marcia L.; Green, Al; Green, Gene; Grijalva, Raul M.; Hall, Ralph M.; Harman, Jane; Hastings, Alcee L.; Herseth Sandlin, Stephanie; Himes, James A.; Hinchey, Maurice D.; Hirono, Mazie K.; Holt, Rush D.; Israel, Steve; Jackson Lee, Sheila; Jackson, Jesse L., Jr.; Jenkins, Lynn; Johnson, Henry C. “Hank,” Jr.; Kagen, Steve; Kennedy, Patrick; Kildee, Dale E.; Lance, Leonard; Lewis, John; LoBiondo, Frank A.; Loebsack, David; Lynch, Stephen F.; Maloney, Carolyn B.; Markey, Edward J.; Massa, Eric J. J.; McGovern, James.; McIntyre, Mike; Meek, Kendrick B.; Meeks, Gregory W.; Michaud, Michael.; Moore, Dennis; Moran, James; Murphy, Tim; Murtha, John P.; Myrick, Sue Wilkins; Norton, Eleanor Holmes; Pascrell, Bill, Jr.; Payne, Donald M.; Platts, Todd Russell; Price, David E.; Radanovich, George; Richardson, Laura; Rooney, Thomas J.; Rothma, Steven R.; Roybal-Allard, Lucille; Rush, Bobby L.; Ryan, Tim; Salazar, John T.; Sanchez, Loretta; Schakowsky, Janice D.; Schrader, Kurt Scott, Robert C. “Bobby”; Sessions, PETE; Shea-Porter, Carol; Shuler, Health; Sires, Albio; Slaughter, Louise McIntosh; Smith, Adam; Smith, Christopher H.; Smith, Lamar; Snyder, Vic; Sullivan, John; Terry, Lee; Titus, Dina; Towns, Edolphus; Turner, Michael R.; Walz, Timothy J.; Watson., Diane E.; Watt, Melvyn L.; Whitfield, Ed; Wilson, Charles A.; Wittman, Robert J.; Wu, David; Yarmouth, John A.; Original Sponsor: Butterfield, G.K.

A Day In History For Brain Injury

2011-07-01T13:56:00.003-04:00

In Photos: Patrick Donohue, Congressman Leonard Lance, Craig Sears, Sarah Jane

If you happened to be in New Jersey yesterday morning and was able to be part of history, joining Congressman Leonard Lance, Barbara Geiger-Parker (CEO of the Brain Injury Association of New Jersey), Alan Leiber (CEO of Overlook Medical Center) Patrick Donohue, Craig Sears, Sarah Jane Donohue and other families, advocates and professionals as we announced the PABI Plan Act (see media advisory below)

Sarah Jane’s belated-Birthday Present
Bi-Partisan Federal Legislation Announced to Implement National PABI Plan

Summit, NJ – Congressman Leonard Lance (NJ-7) will announce federal legislation to implement the National Pediatric Acquired Brain Injury Plan (PABI Plan) at Overlook Medical Center on Thursday, June 30, 2011. Patrick Donohue and his six-year-old daughter, Sarah Jane, the namesake of the Sarah Jane Brain Foundation, along with other brain injury survivors, advocates and professionals will join Rep. Lance at the announcement. The PABI Plan was created by the International Advisory Board of the Sarah Jane Brain Foundation. The PABI Plan was endorsed by over 100 Members of Congress who served as co-sponsors of H.Con.Res. 198 during the 111th Congress.

Sarah Jane’s 6th birthday was June 5, 2011, so this announcement is Patrick’s belated birthday present to her. On June 5, 2009, Patrick’s 4th birthday present to Sarah Jane was announcing the largest healthcare collaboration in U.S. history dealing with PABI (one institution in all 50 states plus D.C. and Puerto Rico was announced as Sarah Jane Brain Foundation State Lead Centers of Excellence). See previous announcement here: www.TheBrainProject.org/thisnews.php?id=21

The National Pediatric Acquired Brain Injury Plan Act (PABI Plan Act) will fund a seven-year national initiative to implement the PABI Plan which develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of American families that have a child/young adult suffering from an acquired brain injury. Here is a link to PABI Plan Act:

www.TheBrainProject.org/PABIPlanAct.php. The PABI Plan Act will fund State Lead Centers of Excellence in every state plus the District of Columbia and Puerto Rico to:

1) Develop a system to collect data throughout their state across the continuum of care from prevention, acute medical treatment after the brain injury, reintegration back into the homes, schools and communities upon discharge from the medical facility and then transitioning into an adult system of greater independence

2) Develop a system of dissemination throughout their state of evidence-based, best practices across the continuum of care

3) Provide a specialized case management system for all PABI families in their state

4) Provide regional or national leadership role in one of the seven Categories of Care within the PABI Plan (Prevention, Acute Phase, Reintegration Phase, Adult Transition Phase, “mild” TBI, Rural/Tele-health and The Virtual Center)

DETAILS
WHAT: News conference announcing PABI Plan Act
WHERE: Overlook Medical Center, Child Life Room, Pediatrics – 6th Floor
99 Beauvoir Avenue, Summit, New Jersey
WHEN: Thursday, June 30, 2011, 10:30-11:30 a.m.

Quick Facts about PABI:
1) PABI is the #1 leading cause of death and disability for American youth

2) PABI is caused by
A) Trauma: traumatic brain injury (TBI), such as motor vehicle crashes, abusive head trauma/Shaken Baby Syndrome, sports-related concussions, falls, gun shot wounds, blast injury from war, etc…
B) Non-trauma: strokes, brain tumors, meningitis, seizures, near-drowning, etc…

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

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

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

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

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

For more information about Sarah Jane and The Sarah Jane Brain Foundation please visit the website www.TheBrainProject.org or read the letter from Patrick Donohue to Sarah Jane when she turned five: www.TheBrainProject.org/lettertosarahjane.php.

During the 111th Congress, over 100 Members endorsed the PABI Plan by serving as a Co-Sponsor of H. Con. Res. 198 which stated, “That Congress—

1) Recognizes that Pediatric Acquired Brain Injury (PABI) is the leading cause of death and disability in the United States for children and young adults from birth up to 25 years of age;

2) Endorses the National Pediatric Acquired Brain Injury Plan as the method to prevent future PABIs and treat all children and young adults suffering from a PABI while supporting their families; and

3) Encourages all Federal, State and local governments to implement the PABI Plan.”

The following 110 Members signed on as Co-Sponsors of H. Con. Res. 198 in the 111th:

Abercrombie, Neil; Baldwin, Tammy; Barrow, John; Bishop, Sanford D., Jr.; Blackburn, Marsha; Blumenauer, Earl; Bonner, Jo; Brown, Corrine; Brown, Henry E., Jr.; Brown-Waite, Ginny; Burgess, Michael C.; Buyer, Steve; Calvert, Ken; Camp, Dave; Carnahan, Russ; Carney, Christopher P.; Castle, Michael N.; Chandler, Ben; Christensen, Donna M.; Clarke, Yvette D.; Cleaver, Emanuel; Cohen, Steve; Connolly, Gerald E. “Gerry”; Costello, Jerry F.; Courtney, Joe; Cuellar, Henry; Cummings, Elijah E.; DeGette, Diana; Delahunt, Bill; Diaz-Balart, Lincoln; Forbes, J. Randy; Foster, Bill; Frank, Barney; Fudge, Marcia L.; Green, Al; Green, Gene; Grijalva, Raul M.; Hall, Ralph M.; Harman, Jane; Hastings, Alcee L.; Herseth Sandlin, Stephanie; Himes, James A.; Hinchey, Maurice D.; Hirono, Mazie K.; Holt, Rush D.; Israel, Steve; Jackson Lee, Sheila; Jackson, Jesse L., Jr.; Jenkins, Lynn; Johnson, Henry C. “Hank,” Jr.; Kagen, Steve; Kennedy, Patrick; Kildee, Dale E.; Lance, Leonard; Lewis, John; LoBiondo, Frank A.; Loebsack, David; Lynch, Stephen F.; Maloney, Carolyn B.; Markey, Edward J.; Massa, Eric J. J.; McGovern, James P.; McIntyre, Mike; Meek, Kendrick B.; Meeks, Gregory W.; Michaud, Michael H.; Moore, Dennis; Moran, James; Murphy, Tim; Murtha, John P.; Myrick, Sue Wilkins; Norton, Eleanor Holmes; Pascrell, Bill, Jr.; Payne, Donald M.; Platts, Todd Russell; Price, David E.; Radanovich, George; Richardson, Laura; Rooney, Thomas J.; Rothman, Steven R.; Roybal-Allard, Lucille; Rush, Bobby L.; Ryan, Tim; Salazar, John T.; Sanchez, Loretta; Schakowsky, Janice D.; Schrader, Kurt; Scott, Robert C. “Bobby”; Sessions, Pete; Shea-Porter, Carol; Shuler, Heath; Sires, Albio; Slaughter, Louise McIntosh; Smith, Adam; Smith, Christopher H.; Smith, Lamar; Snyder, Vic; Sullivan, John; Terry, Lee; Titus, Dina; Towns, Edolphus; Turner, Michael R.; Walz, Timothy J.; Watson, Diane E.; Watt, Melvyn L.; Whitfield, Ed; Wilson, Charles A.; Wittman, Robert J.; Wu, David; Yarmuth, John A.; Original Sponsor: Butterfield, G.K.
####

The United States calls July 4th Independence Day. I have always said as a Brian injury survivor I know what it’s like to have lost my independence. The day this is signed into law I call it Independence Day across the Nation for Brian injury survivor's. Thank you to everyone that has been involved in this history making moment for brain injury.

Craig Sears

Stamford Police Association Bike Helmet Giveaway

2011-06-19T22:22:00.006-04:00

On Saturday, June 18, 2011, from 9AM-1PM at the Fairway Market at 699 Canal Street the Stamford Police Association give away 1,000 free bike helmets to children ages 4 - 16. There will also be a limited number of toddler size helmets available.

According to the Center for Disease Control and Prevention (CDC) children ages 0-14 make almost a half million emergency room visits annually for Traumatic Brain Injuries (TBI). Children under 15 accounted for 53 percent of bicycle injuries treated in emergency departments, according to the Bicycle Helmet Safety Institute.

The bike helmet giveaway was started in 1995, by now retired police officer Glenn Coppola and his wife Peggy in honor of their son Timothy who was hit by a car while riding a bike in 1992. It was the first time ever Timothy was not wearing a bike helmet. Timothy suffered severe brain damage and passed away 22 months later at the age of 10. The Coppolas started the bike helmet giveaway to prevent similar tragedies from occurring to other families.

Since the Stamford Police Association and the Coppola family began the bike giveaway program an estimated 23,000 helmets have been handed out to youngsters.

A special thanks to WWE Superstar Tyson Kidd and Diva Natalya for helping to support the Stamford Police Association Bike Helmet Giveaway On Saturday, June 18, 2011, thanks again for making this a special day. 1000 bicycle helmets were given away.

WWE Superstar Tyson Kidd and Diva Natalya
meet with Traumatic Brain Injury Survivor Craig Sears

Craig’s TBI story

2011-05-13T14:06:00.006-04:00

Part. 1 of 4

People aren't aware of brain injuries. No one thinks brain injuries will affect them or their children. A lot of brain injured people look perfectly normal;

Imagine having a disability that caused you to slur your speech, made it difficult for you to learn new things, and affected your balance. Now imagine that no one knew you had this disability.

That is what it’s like for people living with a disability as the result of a brain injury. Brain injury is known as an invisible disability because there are often no outward physical signs of the disability.

There are 5.3 million people in the United States living with disabilities as the result of a brain injury. Of the 1.7 million Americans who sustain a brain injury every year:

52,000 die,
275,000 are hospitalized,
1.365 million Are treated and released from an emergency department.

It’s not like falling and breaking a leg. You see it, and it heals. A brain injury can last a lifetime. There is no cure, only awareness and prevention. After that, there's only support.

Part. 2 of 4

This blog discusses a true silent epidemic -- traumatic brain injuries (TBIs).

To Whom It May Concern, my name is Craig Sears, and I am a Survivor of a Traumatic Brain Injury. I am writing on behalf of the Sarah Jane Brain Foundation, and I am adding support to the goal of creating a national model care system for children suffering from all Pediatric Acquired Brain Injuries; Helping to protect the children of tomorrow from ever having to experience the horror and heartache of TBI. This coupled with the growing awareness that thousands of our troops returning from Iraq and Afghanistan too are suffering from TBI. This injury is being called the signature wound of these conflicts.

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

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

And in a heartbeat, it was all gone. Suddenly, I came up over a hill, and there was a car going the wrong way. It was too late. I couldn't stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I landed head first into a curb, 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 then. Insult was added to injury. This is where I fell through the cracks. Despite having my head in a cast, no one identified the true nature of my injury me as being a Traumatic Brain injury (TBI). That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died.

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

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

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

Eventually, a sympathetic ear at the Connecticut Governor's office helped arrange a meeting between my family, my doctors, and a state representative. I told them all, I wanted out, I needed out. And it was clear to them that I was right. But where was I to go?

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

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

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

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

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

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

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

Everything I had long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often, ending up in shelters, local lockups, and numerous mental health facilities all over the state. Why? Because there was no help for TBI survivors, I continued to spiral down, and soon I wound up homeless, and not long after that, in prison.

The police, the court, the judge and the law, didn't know, care or consider TBI, or the fact that I had one. And once behind bars, neither did the warden. I served 5-years for what other people would sleep off overnight in the local lockup, and then clear up with a brief court appearance. Instead, I ended up inside a level four, high security prison, surrounded by gang members, rapists, killers, and child molesters. I was locked in a 9'x12' cell twenty-four hours a day with a vicious inmate next to me.

While behind bars, I received absolutely no help for my disabilities. There was no early release, or time off for good behavior from my sentence. TBI or not, I served every measure of that sentence to the fullest. And I suffered regularly the indignities associated with such an environment that common decency prevents me from sharing here. It was hell.

Somehow, I survived to be released in 2003. And again I needed a place to call home. After 20 years of waiting and being turned down, I turned to a local Congressman's office for help. Within 2 months, they cut through the red tape, and I finally received recognition of my TBI. And I was accepted into a HUD Section 8 housing unit.

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

I would consider it an honor to help you reach your goals, and I offer you my help as an advocate.

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

Please let me know what I can do for the Foundation.
Sincerely,

Craig Sears

A Voice for Traumatic Brain Injury, see below

Part. 3
I sustained a TBI some 21+ years ago, and have learned over the years how easy it is for program providers to discriminate against, and take advantage of someone with a brain injury the way the State of Connecticut; Dept of Social Services, Employment Options LLC, etc. did to me.

Lies, Slander, false accusations, made by a Personal Care Aides/Medicaid Waiver Program provider

If you live in Connecticut and you’re looking for Personal Care Aides/Medicaid Waiver Program providers, from my personal experience I would not recommend going to Employment Options LLC 91 Willenbrock Road Oxford CT.

My name is Craig Sears I am doing two things today: Asking for your help and fighting back. The written word can so easily be misinterpreted but everything in this blog is Fact; I am a survivor of traumatic brain injury TBI due to my injury I have memory problems, speech problems, balance issues and many other things. I am disabled because of this and receive services from the state Acquired Brain Injury ABI Medicaid Waiver this waiver allows the state to permit organizations to provide non-medical services to people with TBI enabling them to live in the community outside of nursing homes and institutions.

I think of my fellow brain injury survivor friends as part of my extended brain injury survivor family. Whether I have met them or not! I am posting online my experiences as a survivor of a TBI to show how easy it is for program providers in the State of Connecticut to discriminate against, and take advantage of someone with a brain injury the way the State of Connecticut; Dept of Social Services, Employment Options LLC did to me. In hope, that it can help another brain injury survivor from being taken advantage of.

I would like to say that I'm very disappointed in the way EO handled my case. YES I am irritated! In the 90s I became a spokesman for the Brain Injury Association of Connecticut, advocating for Connecticut’s Acquired Brain Injury Medicaid Waiver implemented in 1999. Employment Options LLC 91 Willenbrock Road, # 3a Oxford, CT is what exactly? I know what they say they are but I'm still not entirely sure what it is they actually do for brain injury survivors since I experienced no help what so ever, except for a lot of BS!

Staff supervisors at Employment Options LLC Jamie Arber, Patty Happy and case manager Richard Kiley told me, Craig Sears; that EO had someone to work with me that was ILST approved turns out they were not! And when that person moved on, EO told me that they had someone else that was ILST approved, turns out they were not! When asked by my doctor about it, again EO stated that they had someone else that was ILST approved turns out they were also not!

On top of that, when Employment Options LLC sent Pre-Vocational Services staff they were instructed by EO management to refrain from providing me any services outlined in my State waiver plan! This made it appear as if they were providing me services when in fact they were not. This is a letter from Staff that was hired to work with me as a Personal Care Aide & how he was instructed by EO management to refrain from providing me any services outlined in my State waiver plan! (Click to enlarge) (Out of respect of staff I will not post his name)

I know all too well as a brain injury survivor what life is like with no help. Been there done that! QLMS LLC another CT program provider worked along with Dr. Annemarie Murphy PhD of Bridgeport and reported a bunch of inaccurate information to DSS and opened the door for Victor Estay and his supervisor Kenneth R. Smith from the state of Connecticut Department of Social Services DSS to wrongly take away my services for no reason and without notice. I am supposed to be protected by the established legislation, which is found within the Medicaid Waiver. Sec. 17b-260a-1I, Individuals who are eligible for ABI services shall be given free choice of all qualified providers of each service included in his or her plan of care. When Mr. Sears exercised this right to choice, DSS refused to authorize service provision and payment to an alternate DSS/ Allied approved provider of his choice, resulting in a complete absence of services for Mr. Sears. Sec. 17b-260a-1J7 states that it is the responsibility of the Department to pay for approved ABI waiver services delivered by qualified providers through its fiduciary agent on behalf of the individual.

When I informed my Medicaid Waiver Doctor and the Office of Protection and Advocacy for Persons with Disabilities (P&A) about the fact I was not receiving services outlined in my State waiver plan that Employment Options LLC reported providing me. Reporting this to my Medicaid Wavier doctor and P&A as the reason why I was not receiving services. Talk about ignorant and self-absorbed staff superiors at Employment Options LLC. When the doctor and the office of P&A confronted EO, they then made unreasonable confrontational and defamation of character accusations regarding me working with female staff, and implied I had acted inappropriately. When I found this out at my Dept. of Social Services team meeting, I immediately asked my doctor to look into this. Out of respect of the doctor’s wishes I am only posting his first name.

Hi Craig

You are correct. Shannon denies every accusation made by EO. Wow!

NeuroStrategies, Inc.
neurostrategies@earthlink.net

RE: Shannon and Employment Options LLC

Attention: Craig Sears

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

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

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

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

Respectfully,

Doctor, Tariq, PhD., M.S., MBA.

Think about what this could do to a man or women with a disability, who has a child. They can be held liable as a result of these false accusations, made by a Personal Care Aides/Medicaid Waiver Program provider if anything occurs. (I am threatened by this)

Traumatic brain injury TBI is a major health problem that disproportionately affects young people. It is the leading cause of death for children. People aren't aware of brain injuries. TBI is often referred to as the silent epidemic because the complications such as; changes affecting thinking, language or emotions, may not be readily apparent. No one thinks brain injuries will affect them or their children. A lot of brain injured people look perfectly normal. Imagine having a disability that caused you to slur your speech, made it difficult for you to learn new things, and affected your balance. Now imagine that no one knew you had this. That is what it’s like for people living with a disability as the result of a brain injury. This is what I’m faced with everyday. Brain injury is also referred to as an invisible disability because there are often no outward physical signs. It’s not like falling and breaking a leg. You see it, and it heals. A brain injury can last a lifetime. There is no cure, only awareness and prevention. After that, there's only support.

Can you believe EO has contracts and/or services Bureau of Rehabilitation services, the acquired brain wavier, DDS, and a variety of school system; in an effort to advocate for myself and all those individuals who are supposed to be protected by the established legislation? I have made Waiver Provider complaints with the State of Connecticut; Dept of Social Services, Allied Community Resources, CT Governors office, Congressman Jim Himes D-CT 4th District, Commission on Human Rights and Opportunities, etc, regarding DSS, Employment Options LLC unethical and illegal treatment of me. And got no help what so ever because they do not live up to their expectations/mission.

Let your voices be heard loud and clear! Is Employment Options LLC the kind of service provider you want caring for our children/friends/loved ones? Call Social Services tell them about this blog and ask them to investigate Employment Options LLC as an approved allied community resources ABI Medicaid Waiver Program Provider. I can only imagine how they are slandering other brain injury survivors to get out of providing services and getting paid by the state.

If you or someone you know has Employment Options LLC as there Waiver Program Provider give them this INFO and tell them that it is recommend for them to tell EO to kick rocks, and get someone new!

1) Anyone on the ABI waiver can call allied community resources and ask for a Waiver Provider list.

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.

2) After they call allied they should go over the list to find a new provider. That is when you call your DSS worker and tell them the new provider’s name.

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.

Sincerely,

Craig Sears, Member Connecticut Traumatic brain injury advisory board.

Part. 4

Those with TBI need their voices heard.

My name is Craig Sears I am a survivor of Traumatic Brain Injury (TBI) from a motorcycle accident over 20 years ago. Due to my injury I have memory problems, speech problems, balance issues and many other things. I am disabled because of this and receive services from the state which enable me to remain in the community instead of in a nursing home, in prison or on the streets.

However, the State of Connecticut wrongly took away those services, for no reason and without notice. Fortunately I am a strong advocate for myself and after many phone calls, including to my Congressman’s office, I was able to have them reinstate my services – but not without cost to me as I went for so long without getting the services I needed. It also brought to my attention the sad state of the system as it currently exists – it is designed to take advantage of people with disabilities. Another person with a TBI in my shoes would likely not have had the ability to advocate for themselves as I did, and without services they would not have anybody else willing to do it on their behalf. This is a very disturbing situation and it shows how easy it is for states to discriminate against and take advantage of someone like me – it’s like taking candy from a baby!

There is a national organization called the Sarah Jane Brain Foundation whose Advisory Board wrote a national plan (the National Pediatric Acquired Brain Injury Plan) which would help in situations such as mine. The plan calls for the development of 52 State Lead Centers of Excellence which would, among other things, have case managers specially trained to assist children and young adults with brain injuries. If the National PABI Plan was in place, that case manager would have stepped in during my crisis and been my advocate. These people would be trained to help those who cannot help themselves. Imagine what would have happened to someone else in my same shoes who did not know to contact the people that I contacted to get my services back! They would have not gotten them reinstated and would have ended up on the streets or in prison or dead, that’s what.

That’s why the goal and mission of the Sarah Jane Brain Foundation are so very important. For myself, I wish on that July afternoon 21 years ago 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.

Sincerely, Craig Sears, A Voice For Traumatic Brain Injury

March is Brain Injury Awareness month: Case name - Craig Sears vs. EMPLOYMENT OPTIONS LLC, Michele L. Zurko – Smith, 91 Willenbrock Road Suite 3A Oxford CT 06478 discriminating against me on the basis of my physical disability!

2011-03-18T08:55:00.038-04:00

When Craig Sears complained about the “fact” services were not being provided, EMPLOYMENT OPTIONS, LLC unreasonable confrontational and defamed his character by stating they had concerns about Craig working with female staff and implying he had acted inappropriately with staff and Reporting it to Craig’s ABI Medicaid Waiver team

Example of what you will see…

Hi Craig

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

Dr, Tariq, PhD., M.S., MBA

Craig is a person with a physical disability, specifically Craig’s condition is known as traumatic brain injury

In Craig’s words is this really the American way how to help a person with a physical disability (TBI) that puts their trust into their health care service provider?

Craig is requesting that Employment Options LLC is removed as an allied community resource ABI Medicaid Waiver Provider Craig is also requesting a complete investigation into his case and every brain injury survivor’s case they are providing services for.

For more Info Click on: http://braininjurytbi.blogspot.com/2010/06/employment-options-llc-91-willenbrock.html Look for the letter’s written by Craig’s ABI Medicaid Waiver Dr. Tariq PhD MS and Craig’s Human Services Advocate Jessica from P&A. As well as letters on how Employment Options told their staff NOT to work with Craig on anything pertaining to his ABI Medicaid wavier.

Craig Sears, Member Connecticut Traumatic brain injury advisory board.

Connecticut Human Services Committee Public Hearing Testimony Craig Sears. HB 5893: AN ACT CONCERNING HOME AND COMMUNITY-BASED SERVICES FOR PERSONS WITH ACQUIRED BRAIN INJURY

2011-03-01T08:00:00.002-05:00

The Human Services Committee will hold a public hearing on Tuesday, March 1st at 11:00 A.M. in Room 2B of the Legislative Office Building (LOB). One of the bills up for discussion is HB 5893: AN ACT CONCERNING HOME AND COMMUNITY-BASED SERVICES FOR PERSONS WITH ACQUIRED BRAIN INJURY.

This bill would require equal access to ABI Waiver slots for those who have been on the waitlist and those transitioning off the Money Follows the Person demonstration program. As many of you know, currently individuals are forced to be institutionalized in order to access home and community based services in a timely manner.

Date
March 1 2011
Human Services Committee Public Hearing Testimony

My name is Craig Sears; I am a person with a brain injury speaking up. I am here today to speak in support of HB 5893: An Act Concerning Home and Community Based Services for Persons with Acquired Brain Injury. I was in a motor vehicle accident in 1987, leaving me with a traumatic brain injury (TBI). After suffering a brain injury, as most survivors do, I have been faced with many new and overwhelming challenges in everyday living. As a survivor of a brain injury, my journey made me all-too familiar with the difficulties of individuals and families working through the arbitrary system of care. In the 1990s I became a spokesman for the Brain Injury Association of Connecticut, advocating for Connecticut's Acquired Brain Injury Medicaid Waiver, implemented in 1999. This waiver allows the state to permit organizations to provide non-medical services to people with TBI enabling them to live in the community outside of nursing homes and institutions. People should not be forced to enter nursing homes or other institutions in order to gain access to the Waiver. This legislation would help assure that ALL those with brain injuries who need the ABI Medicaid Waiver program have equal access.

In an effort to advocate for myself and all those individuals who are protected by the established legislation which is found within the Acquired Brain Injury (ABI Medicaid Waiver) Program I am asking for your support of HB 5893.

Craig Sears Survivor of a Traumatic Brain Injury
Member of the Connecticut TBI Advisory Board

CT, Governor Dannel P. Malloy Budget which was introduced last week calls for total elimination of the Brain Injury Association of Connecticut operating grant. DSS “Services for Persons with Disabilities”.

2011-02-28T17:01:00.000-05:00

My name is Craig Sears; I am a person with a traumatic brain injury speaking up. In an effort to advocate for myself and all of US with ABI/TBI here in the State of Connecticut as a survivor of a brain injury my journey made me all-too familiar with the difficulties of individuals and families working through this arbitrary system of care!

In CT there is a large contingency of people who have struggled with the effects of brain injury it is random from school district to school district and completely haphazard from one doctor’s office to the next.

In the 1990s I became a spokesman for the Connecticut Brain Injury Association, advocating for Connecticut's Acquired Brain Injury Medicaid Waiver, implemented in 1999. This waiver allows the state to permit organizations to provide non-medical services to people with TBI enabling them to live in the community outside of nursing homes and institutions.

BIAC has been contracted by state government since 1984 to provide essential services which the state government cannot provide, including resource facilitation, information, telephone support and outreach. There is no one else in the state of CT that does what, BIAC does. There is nowhere else to go.

BIAC saves the state money each day through fewer institutionalizations, ER visits, incarcerations and by helping to reduce rates of recidivism. Despite huge increases in need,

BIAC has continually provided its services with dwindling resources. Shared sacrifice is important; however total elimination of this funding will severely curtail BIAC’s ability to respond to the needs of the community while costing the state money.

If you are questioned about any specifics regarding our funding, simply ask them to refer the question to the Executive Director of BIAC.
Julie Peters, CBIS Executive Director Brain Injury Association of CT | 200 Day Hill Road, Suite 250, Windsor, CT 06095 | 860-219-0291 www.biact.org

Please see below for my TBI story this will tell you why we need The Brain Injury Association of CT etc! If you need more let me Know. Please help me get this message to the Governor’s office and feel free to pass it on to anyone

I'm posting online some of my experiences as a survivor of a traumatic brain injury. It is to show the way the States - United States is not dealing with brain injury and the human cost associated with this neglect.

Thank you,
Craig Sears
Please refer too;
www.voiceformychild.com

resource in recovery. A partner in prevention

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.

It was July 9, 1987. It was a beautiful Connecticut summer afternoon and I was out riding my motorcycle. I had just turned 20, and had a lot going for me. 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 was making good money for a kid my age. I had a great girlfriend and lots of friends. I had two cars and lived in a nice condo right on the water. I was living the American Dream. I'll leave that up to you to fill it in because I had everything a man could have possibly wanted — and in a heartbeat it was all gone. As I was coming up over a hill, there was a car going the wrong way and I was unable to stop. We collided. I was thrown an estimated 40 feet into on-coming traffic. I landed headfirst into a curb.

I have no memory of the next six months. That period of time is a black hole in my life. I was in and out of a coma, undergoing multiple surgeries. From there I was transferred to a rehabilitation center. While I was in this treatment center, I had to relearn everything about life down to using the bathroom on my own. There, I was fighting against the physical pain and the pain of not knowing who I was. Then one day they decided to transfer me out to a locked, mental health ward in Bridgeport, Connecticut where I was constantly put in four-point restraints and forcefully drugged. (I was told there were no other services offered for people with traumatic brain injury.) After being in the mental health ward for nine months, I began to regain some memory and I knew this wasn't for me! Keep in mind traumatic brain injury is not a mental illness.

So I started to call around to town officials and state government offices to ask them how to get out of the ward. The ward was holding me against my will and I knew I didn't need to be there. I did know that I needed help in other areas because of my brain injury but I also knew I was not mentally ill. After getting through to the Connecticut Governor's office and sharing my story with one of his representatives, they got a hold of the hospital and set up a jury room filled with my family, doctors, and a representative from the state office. All the while, I was saying that I wanted out of the ward. In order to be taken out of there, I had to have a place to go and my only option was my family and I did not want to burden them with the pain that I was going through.

I ended up in a one-room efficiency apartment. At the time, the building was a major drug trafficking building with rats, roaches, and prostitutes. There was no other place for me to go, no help at all; my family had tried everything to get me help. There were no group homes, no programs, no services offered, nothing. I still did not know how to do the basic functions of life so I would wander the streets trying to regain some kind of memory. I would watch other people to see what they were doing, how they were acting in order to regain memory of anything that I knew how to do before the accident. I knew at that time this was not who I was.

Things began to improve. My mother got me a weight set, my father bought me a bicycle, and I started volunteering at St. Vincent's Hospital in Bridgeport. At the hospital, I could go into the physical therapy rooms and I could watch what they were doing for rehabilitation. Then I would go back home at night to do the exercises on my own in order to regain my strength and abilities. But I overworked myself physically so as time went on, I found that I was spitting out blood and my body was in terrible pain. A touch hurt. I didn't know better, I didn't realize I was harming myself rather than helping and improving. My mother had to take me many times to the hospital because I couldn't walk or move.

Socially, things were awkward. One day after volunteering I was leaving the hospital and I saw a lady fall to the floor. My instincts were to grab a wheelchair and put her in it and run to the emergency department. Because I had ran to the emergency department, they called me the next day and told me not to return. I was crushed. There was a lot of other pain from being turned away people always assumed that I was drinking or using drugs because I would slur my words and my equilibrium was off because of my TBI. It became harder and harder to find where I fit in. After remembering little things from watching other people and always trying to look at the good things in life, I started wondering what it would be like to get out of where I was living in Bridgeport. I asked my family for help. They got me a different apartment. Every time I moved into a different place, I'd think it would help me by being in a better environment. I would temporarily feel like things were changing.

But I had learned a wrong way of thinking to solve my problems. I started drinking and getting into drugs. I thought it would help me cope with the pain by letting me forget all that I went through. Everything I had fought for, I started to lose. I found myself alone even more and getting into trouble, ending up in numerous mental health facilities all over the state because there is no help for TBI survivors. I continued to spiral down, and soon I wound up on the streets and homeless, and not long after that, in prison I had several brushes with the law. While I struggled daily to live with my brain injury, I ended up with several minor arrests for public urination and things of that sort.

“The state of Connecticut did find a way to use my injury against me. It was a probation violation, for which I would ultimately receive a five-year prison term. I spent five years locked up in a level-four high-security prison where I received absolutely no help for my disabilities. I was locked in an 8'x 10' cell twenty-four hours a day surrounded by gang members, rapists, killers, and child molesters, all for peeing in a garage. Does that sound like justice to you? The police, the court, and the judge didn't know, care, or consider my TBI. And once behind bars, neither did the warden. I served five-years for what other people would sleep off overnight in the local lock-up, and then clear up with a brief court appearance. Again, there were no programs, no early release, or time off for good behavior. TBI or not, I served every measure of that sentence to the fullest. Common courtesy prevents me from sharing here. I will leave it up to your imagination to fill in the blanks. It was hell”

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

Life though continues to be a struggle. I have few options, and fewer choices. I am very uncertain of my future. I still want the American Dream, but it feels further away than ever. I want to be hopeful, but I know all too well how quickly good can go bad in life. So I try my best to help those with TBI get the help we need.

Craig Sears

Connecticut Governor Malloy and Lt. Governor Nancy Wyman I wish to add my “VOICE” to this request to establish through state statute the CT TBI Advisory Board to promote a comprehensive and coordinated system of supports and services for persons with TBI and their families

2011-02-22T22:49:00.001-05:00

My name is Craig Sears; I am a person with a brain injury speaking up. In an effort to advocate for myself and all those individuals who are protected by the established legislation which is found within the Acquired Brain Injury (ABI Medicaid Waiver) Program I am applying for your help we the brain injury survivors need a TBI Advisory Board "ETC"!

I was in a motor vehicle accident in 1987, leaving me with a traumatic brain injury (TBI). After suffering a brain injuries, as like most survivors’ do. I have been faced with many new and overwhelming challenges in everyday living. As a survivor of a brain injury my journey made me all-too familiar with the difficulties of individuals and families working through the arbitrary system of care!

In the 1990s I became a spokesman for the Connecticut Brain Injury Association, advocating for Connecticut's Acquired Brain Injury Medicaid Waiver, implemented in 1999. This waiver allows the state to permit organizations to provide non-medical services to people with TBI enabling them to live in the community outside of nursing homes and institutions
Please see below for my TBI story this will tell you why we need this board etc!

I'm posting online some of my experiences as a survivor of a traumatic brain injury. It is to show the way the States - United States is not dealing with brain injury and the human cost associated with this neglect.

Sincerely,
Craig Sears

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.

It was July 9, 1987. It was a beautiful Connecticut summer afternoon and I was out riding my motorcycle. I had just turned 20, and had a lot going for me. 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 was making good money for a kid my age. I had a great girlfriend and lots of friends. I had two cars and lived in a nice condo right on the water. I was living the American Dream. I'll leave that up to you to fill it in because I had everything a man could have possibly wanted — and in a heartbeat it was all gone.

As I was coming up over a hill, there was a car going the wrong way and I was unable to stop. We collided. I was thrown an estimated 40 feet into on-coming traffic. I landed headfirst into a curb.

I have no memory of the next six months. That period of time is a black hole in my life. I was in and out of a coma, undergoing multiple surgeries. From there I was transferred to a rehabilitation center. While I was in this treatment center, I had to relearn everything about life down to using the bathroom on my own. There, I was fighting against the physical pain and the pain of not knowing who I was. Then one day they decided to transfer me out to a locked, mental health ward in Bridgeport, Connecticut where I was constantly put in four-point restraints and forcefully drugged. (I was told there were no other services offered for people with traumatic brain injury.) After being in the mental health ward for nine months, I began to regain some memory and I knew this wasn't for me! Keep in mind traumatic brain injury is not a mental illness.

So I started to call around to town officials and state government offices to ask them how to get out of the ward. The ward was holding me against my will and I knew I didn't need to be there. I did know that I needed help in other areas because of my brain injury but I also knew I was not mentally ill. After getting through to the Connecticut Governor's office and sharing my story with one of his representatives, they got a hold of the hospital and set up a jury room filled with my family, doctors, and a representative from the state office. All the while, I was saying that I wanted out of the ward. In order to be taken out of there, I had to have a place to go and my only option was my family and I did not want to burden them with the pain that I was going through.

I ended up in a one-room efficiency apartment. At the time, the building was a major drug trafficking building with rats, roaches, and prostitutes. There was no other place for me to go, no help at all; my family had tried everything to get me help. There were no group homes, no programs, no services offered, nothing. I still did not know how to do the basic functions of life so I would wander the streets trying to regain some kind of memory. I would watch other people to see what they were doing, how they were acting in order to regain memory of anything that I knew how to do before the accident. I knew at that time this was not who I was.

Things began to improve. My mother got me a weight set, my father bought me a bicycle, and I started volunteering at St. Vincent's Hospital in Bridgeport. At the hospital, I could go into the physical therapy rooms and I could watch what they were doing for rehabilitation. Then I would go back home at night to do the exercises on my own in order to regain my strength and abilities. But I overworked myself physically so as time went on, I found that I was spitting out blood and my body was in terrible pain. A touch hurt. I didn't know better, I didn't realize I was harming myself rather than helping and improving. My mother had to take me many times to the hospital because I couldn't walk or move.

Socially, things were awkward. One day after volunteering I was leaving the hospital and I saw a lady fall to the floor. My instincts were to grab a wheelchair and put her in it and run to the emergency department. Because I had ran to the emergency department, they called me the next day and told me not to return. I was crushed. There was a lot of other pain from being turned away people always assumed that I was drinking or using drugs because I would slur my words and my equilibrium was off because of my TBI. It became harder and harder to find where I fit in. After remembering little things from watching other people and always trying to look at the good things in life, I started wondering what it would be like to get out of where I was living in Bridgeport. I asked my family for help. They got me a different apartment. Every time I moved into a different place, I'd think it would help me by being in a better environment. I would temporarily feel like things were changing.

But I had learned a wrong way of thinking to solve my problems. I started drinking and getting into drugs. I thought it would help me cope with the pain by letting me forget all that I went through. Everything I had fought for, I started to lose. I found myself alone even more and getting into trouble, ending up in numerous mental health facilities all over the state because there is no help for TBI survivors. I continued to spiral down, and soon I wound up on the streets and homeless, and not long after that, in prison I had several brushes with the law. While I struggled daily to live with my brain injury, I ended up with several minor arrests for public urination and things of that sort.

The state of Connecticut did find a way to use my injury against me. It was a probation violation, for which I would ultimately receive a five-year prison term. I spent five years locked up in a level-four high-security prison where I received absolutely no help for my disabilities. I was locked in an 8'x 10' cell twenty-four hours a day surrounded by gang members, rapists, killers, and child molesters, all for peeing in a garage. Does that sound like justice to you? The police, the court, and the judge didn't know, care, or consider my TBI. And once behind bars, neither did the warden. I served five-years for what other people would sleep off overnight in the local lock-up, and then clear up with a brief court appearance. Again, there were no programs, no early release, or time off for good behavior. TBI or not, I served every measure of that sentence to the fullest. Common courtesy prevents me from sharing here. I will leave it up to your imagination to fill in the blanks. It was hell.

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

Life though continues to be a struggle. I have few options, and fewer choices. I am very uncertain of my future. I still want the American Dream, but it feels further away than ever. I want to be hopeful, but I know all too well how quickly good can go bad in life. So I try my best to help those with TBI get the help we need

Sarah Jane's Dad Heads To Mumbai, India To Change The World!

2011-02-18T09:52:00.002-05:00

Keynote Presentation at Worldwide Conference Sunday
"Developing An International Pediatric Acquired Brain Injury Plan" Dedicated to Dr. Jane Gillett Mumbai, India - The Founder of the Sarah Jane Brain Foundation and the father of its namesake, Patrick Donohue, will be delivering the keynote luncheon presentation at the Academia Eurasiana Neurochirurgica 2011 Convention on Sunday, February 20 at the Taj Mahal Hotel in Mumbai, India. This is an international conference of many of the leading neurosurgeons throughout Europe and Asia. Mr. Donohue will be dedicating the presentation to Dr. Jane Gillett, who recently lost her battle with cancer. She was one of the leading worldwide experts dealing with pediatric acquired brain injury, was one of the original authors of the National Pediatric Acquired Brain Injury Plan (PABI Plan) and was the President of the International Paediatric Brain Injury Society www.ipbis.org.

WHO: Patrick B. Donohue, Esq.
Father, Sarah Jane Donohue
Founder, The Sarah Jane Brain Foundation

WHAT: Keynote Luncheon Presentation "Developing An International Pediatric Acquired Brain Injury Plan" dedicated to Dr. Jane Gillett

WHERE: Academia Eurasiana Neurochirunrgica 2011
Taj Mahal Palace & Tower
Mumbai, India

WHEN: Sunday, February 20, 2011 1:30 to 2:30 p.m. (local time)
For more information about the convention please visit www.academiaeurasiana2011.com.

For more information about The Sarah Jane Brain Foundation, please visit their website www.TheBrainProject.org.

Financial information about this organization and a copy of its license are available from the North Carolina State Solicitation Licensing Branch at 888-830-4989. The license is not an endorsement by the State.

Our Florida state charity solicitation registration code is CH31653. A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE (800-435-7352) WITHIN THE STATE. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE.

----- Attachment Follows-----

Hi,
Morgan Stanley Smith Barney just released the latest edition of Perpectives in Philanthropy highlighting the Sarah Jane Brain Foundation and several other charities here is the link: http://www.morganstanley.com/cs/perspectivesinphilanthropyvol5MSSB.pdf.

This was sent to all 18,000+ Financial Advisors worldwide at Morgan Stanley Smith Barney as well as many clients who have donor-advised fund accounts. Please take a couple of minutes to read about our efforts as well as several other worthwhile organizations working to change the world! The theme of this issue is "Medical Philanthropy and Global Healthcare."

I am also very excited I have been invited to give the keynote luncheon presentation at the 16th Academia Eurasiana Neurochirurgica 2011 Convention in Mumbai, India this Sunday! This is an international conference of many of the leading neurosurgeons throughout Europe and Asia (see media advisory below). If you happen to be in Mumbai this weekend let me know!

As always, please continue to keep the prayers coming for Sarah Jane and the millions of children and young adults who suffer from the #1 leading cause of death and disability for American youth: brain injury!

All the best,
Patrick

P.S. On a very sad note, one of the leading experts in the world dealing with kids with brain injuries and one of the authors of the National PABI Plan, Dr. Jane Gillett, lost her battle with cancer -- she will be horribly missed and I will be dedicating my presentation in India to her memory.

Patrick B. Donohue, Esq.
Founder, The Sarah Jane Brain Foundation
339 Fifth Avenue - Suite 405
New York, NY 10016
(212) 576-1180
www.TheBrainProject.org

Fro more info Contact: Erika Langhart
(212) 576-1180 or Erika@thebrainproject.org

Sarah Jane Brain Foundation Mourns Loss of Devoted Colleague and Friend

2011-02-17T13:41:00.000-05:00

For Immediate Release Contact: Erika Langhart
February 17, 2011 (212) 576-1180 or erika@thebrainproject.org

New York, NY -- The Sarah Jane Brain Foundation and Members of the SJBF Steering Committee mourned the loss of Dr. Jane Gillett who was a Member of the Sarah Jane Brain Foundation's International Advisory Board. Dr. Gillett passed away Wednesday morning after battling a rare and highly aggressive cancer. She was one of the leading experts in the world dealing with pediatric acquired brain injury and was one of the authors of the National Pediatric Acquired Brain Injury Plan (PABI Plan).

"Sarah Jane's world is better off since Dr. Jane Gillett was part of it. It is a sad day today without Dr. Gillett. The world would be a lot better place if there were more Jane Gilletts in it," said Patrick Donohue, father of Sarah Jane Donohue and Founder of the Sarah Jane Brain Foundation.

"Jane began as a speech-language pathologist with a passion for kids and neurology. She went back to school to become a pediatric neurologist and a well spoken advocate for children with neurological disorders, especially ABI (acquired brain injury). Her commitment to community reintegration resulted in the development of a community reentry plan that is now duplicated in many European countries," said Dr. Roberta DePompei, Chair of the SJBF Steering Committee and Professor and Chairman of the Department of Speech-Language Pathology at University of Akron. "She was one of a few individuals who stayed an extra day to assure that the acute portions of the PABI Plan were well written. She was also a friends to everyone she met and most importantly, she could always select a great bottle of wine!"

"We have lost a colleague, a friend and a sister. Most importantly, our kids with brain injuries and their families have lost one of the strongest advocates I have ever met," said Dr. Ronald Savage, a Member of the SJBF Steering Committee and Chairman of the North American Brain Injury Society.

"Jane was a wonderful blend of strong and sensitive who could see the big picture yet always relate warmly to the individual. Her PABICOP 'flower' model showed great respect for the child and family as the center point yet recognized the key importance of the community that surrounds them. She was always willing to see brain injury rehabilitation as a collaborative team process, all coming together to help the child and family," said Dr. Gerry Gioia, Vice-Chair of the SJBF Steering Committee and SJBF National Lead Director for "mild" TBI, as well as Chief of Division of Pediatric Neuropyschology and Director of the SCORE Program at Children's National Medical Center. "Though we will miss her dearly, her legacy will live on and children will be better for it."

"Jane's flower model is, in fact, a living legacy of someone who was a wonderful colleague and an effective advocate. I am sure her family is surrounded by flowers, however none so lovely as the one she crafted for the children of the world," said Dr. Joseph Tepas III, a Member of the SJBF Steering Committee and Professor of Surgery and Pediatrics at University of Florida.

"I am very happy to have had the chance to know Jane and to work with her on a topic which she was so passionate about. From our first meeting in New York City at the Sarah Jane Brain Foundation Advisory Board inception, through the extra work she put in to get the first draft of the PABI Plan completed, to her participation in our Sports Concussion symposium at last fall's Child Neurology Society meeting, it was always a pleasure to talk and work with her," said Dr. Christopher Giza, a Member of the SJBF Steering Committee and Associate Professor of Pediatric Neurology and Neurosurgery at UCLA Brain Injury Research Center. "We've lost a friend and colleague, but the effort she championed for kids with brain injuries goes on!"

"I think the one amazing thing about Jane (among many) is that WETA chose to feature her video comments on school issues on the Brainline Kids site. It is rare that a neurologist would be so well-spoken, knowledgeable and passionate about the need for schools to do their part in supporting children with brain injuries," said Dr. Ann Glang, a Member of the SJBF Steering Committee and SJBF National Lead Director for Reintegration, as well as Senior Fellow and Research Professor at the Teaching Research Institute and Oregon Center for Applied Science.

Dr. Jane Marie Ruth Gillett, MD, FRCP (C) MHSc, BSc. Hon., was an Associate Clinical Professor in the Department of Medicine at McMaster University in Hamilton, Ontario. Dr. Gillett was also focused on resident teaching and she was recently selected to receive the First Annual John V. Basmajian Award for Excellence in Postgraduate Teaching. To see her complete CV please look here: http://www.thebrainproject.org/advisoryBoard/Jane_Gillett/CV.pdf

#####

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 212.576.1180
www.thebrainproject.org

Sarah Jane's Dad Addresses HomeAway's Super Bowl "Test Baby" Ad National Tour To Raise Awareness About Youth Brain Injury

2011-02-09T21:02:00.000-05:00

Austin, TX - The founder of the Sarah Jane Brain Foundation and the father of its namesake, Patrick Donohue, traveled to the Austin-based headquarters of HomeAway.com this morning to address their Super Bowl Ad depicting a "test baby" being slammed against a glass window at a press conference. The Sarah Jane Brain Foundation has just begun a nationwide tour to raise awareness about youth sports-related concussions and other brain injuries, such as abusive head trauma. The tour began in North Carolina during the NHL All-Star weekend, is traveling throughout Texas during Super Bowl week and then travels to over 40 states over the next six months. HomeAway CEO, Brian Sharples, released a letter prior to the press conference apologizing for their "Test Baby" Super Bowl ad as well as completely altering their media campaign (click here to read the Brian Sharples' letter: http://www.homeaway.com/info/media-center/press-releases/2011/super-bowl-ad-response?cid=SM_tw_text_t_pr_sf1050011).

Patrick Donohue said, "HomeAway should be commended for its swift and decisive action to remove their 'Test Baby' television ad which ran during the Super Bowl. After watching the ad during the Super Bowl, we presented them with the facts that 75% of abusive head trauma is caused by young males as well as brain injury being the leading cause of death and disability. HomeAway agreed to remove all images of the 'test baby' being smashed against a glass wall, thrown through the glass window or being dropped." Donohue is the founder of the Sarah Jane Brain Foundation and father of its namesake. "This is a great example of an organization making a 'Super' response to a difficult situation and being a good corporate citizen."

"I was really pleased to see HomeAway be so responsive to genuine concerns about injuries and violence toward children. I know the ad campaign costs them significant amounts of money. They should be congratulated for understanding the real distress that families and parents could have in seeing their campaign and generating a solution that minimizes the adverse effects," stated Dr. Desmond Runyan, Professor of Social Medicine and Pediatrics at University of North Carolina-Chapel Hill, a Steering Committee Member of the Sarah Jane Brain Foundation International Advisory Board and one of the leading experts on child abuse. "HomeAway stepped up to the plate and did the right thing."

The press conference was held outside the headquarters of HomeAway.com at 1011 West Fifth Street in Austin, Texas (across the street in the OfficeMax Parking lot in front of the Sarah Jane Brain Foundation's 40-foot traveling RV) on Tuesday morning, February 8, 2011 at 9:15 a.m. (CST).

For more information about The Sarah Jane Brain Foundation, please visit their website www.TheBrainProject.org

Brain Injury Survivor Supporting the mission of the Sarah Jane Brain Foundation to implement the National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of PABI families wherever they live in America

2011-02-01T16:40:00.002-05:00

To Whom It May Concern my name is Craig Sears I am a Survivor of a Traumatic Brain Injury.

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

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

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

And in a heartbeat, it was all gone. Suddenly, I came up over a hill, and there was a car going the wrong way. It was too late. I couldn't stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I landed head first into a curb, 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 then. Insult was added to injury. This is where I fell through the cracks. Despite having my head in a cast, no one identified the true nature of my injury me as being a Traumatic Brain injury (TBI). That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died.

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

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

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

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

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

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

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

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

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

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

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

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

Everything I had long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often, ending up in shelters, local lockups, and numerous mental health facilities all over the state. Why? Because there was no help for TBI survivors, I continued to spiral down, and soon I wound up homeless, and not long after that, in prison.

The police, the court, the judge and the law, didn't know, care or consider TBI, or the fact that I had one. And once behind bars, neither did the warden. I served 5-years for what other people would sleep off overnight in the local lockup, and then clear up with a brief court appearance. Instead, I ended up inside a level four, high security prison, surrounded by gang members, rapists, killers, and child molesters. I was locked in a 9'x12' cell twenty-four hours a day with a vicious inmate next to me.

While behind bars, I received absolutely no help for my disabilities. There was no early release, or time off for good behavior from my sentence. TBI or not, I served every measure of that sentence to the fullest. And I suffered regularly the indignities associated with such an environment that common decency prevents me from sharing here. It was hell.

Somehow, I survived to be released in 2003. And again I needed a place to call home. After 20 years of waiting and being turned down, I turned to a local Congressman's office for help. Within 2 months, they cut through the red tape, and I finally received recognition of my TBI. And I was accepted into a HUD Section 8 housing unit.

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

This is why the goal and mission of the Sarah Jane Brain Foundation are important. For myself, I wish on that July afternoon 22 years, that there was a national PAPI plan in place. I wish that the doctors, and nurses, and all the states, cops, judges, and people whoever had the power over me had a clue about TBI. I wish that when I needed it, there were people to turn to, answers to the questions I didn't even know I had, and the resources in place for me. I wonder how different my life would be today.

I would consider it an honor to help you reach your goals, and I offer you my help as an advocate.

Sincerely,
Craig Sears
A Voice for Traumatic Brain Injury

I WOULD LIKE TO ENCOURAGE ALL THE FAMILIES ACROSS THE COUNTRY TO VOICE THIER OPINION ON WHAT THE PABI PLAN WOULD MEAN TO YOUR FAMILY PLEASE SEND ME A WRITTEN TEMPLATE OR VIDEO WITH YOUR NAME AND WHAT STATE YOU LIVE IN STATING YOUR OPINION AND I WILL POST IT ON MY BLOGS TODAY

PLEASE ENCOURAGE OTHERS TO GET INVOLVED

THANK YOU YOUR FRIEND CRAIG SEARS

email it to: craig@thebrainproject.org

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 212.576.1180

SJBF is launching a national tour to raise awareness about pediatric acquired brain injury

2011-01-28T12:42:00.008-05:00

The Sarah Jane Brain Foundation’s 2011 National PABI Plan Tour kicks off in North Carolina during the NHL All-Star weekend, January 28-31. It will then continue across the country to bring concussion awareness and speak about prevention, identification and treatment of the number one cause of death and disability for American youth: brain injury. There will be high school presentations, town hall meetings, and webcasts

If you would like to help out in your state, please email Patrick@TheBrainProject.org

Here is what the Angels On The Bay Express looks like as it travels down the highways in your State starting January 28, 2011... Get involved somehow with helping to spread the word. your friend Craig Sears

Quick Facts

◦PABI = Pediatric Acquired Brain Injury

◦PABI is the #1 cause of death and disability for children and young adults in the United States

◦Causes of PABI can be both Traumatic Brain Injury (TBI) as well as non-traumatic brain injury (ABI)

■TBI causes: falls, motor vehicle incidents, sports concussions, blast injuries from war, violence/assault/child abuse/shaken baby syndrome, gunshot wounds, bicycle accidents, or anything else resulting in trauma to the head

■Non-traumatic causes: brain tumors, meningitis, strokes, high fevers, lack of oxygen such as in near-drowning incidents or due to difficulty breathing after birth, poisoning, ischemia and substance abuse

■More than 3,000,000 new pediatric brain injuries ranging from "mild" to severe occur every single year in the United States alone

◦Over 1,000,000 are hospitalized each year due to Pediatric TBI

◦Over 17,000 annually incur a permanent disability due to Pediatric TBI

◦Over 5,000 deaths occur annually due to Pediatric TBI

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org

Jobs available to Change The World! - The Sarah Jane Brain Foundation

2010-12-02T23:34:00.000-05:00

The mission of the Sarah Jane Brain Foundation is to assist the millions of children and their families suffering from Pediatric Acquired Brain Injuries (PABI).

The Sarah Jane Brain Foundation is preparing to launch a nationwide tour in 2011 to educate the public about the #1 cause of death and disability for American youth: pediatric acquired brain injury. The tour will start in early 2011 and is currently planned to last at least six months and will travel to over 30 different states. We will be traveling to local high schools informing them about the risks and symptoms of sports-related concussions (brain injury), setting up town hall meetings at hospitals and universities introducing the National Pediatric Acquired Brain Injury Plan (PABI Plan) as real healthcare reform and attending professional, college and youth sporting events to raise awareness about brain injury to a more broad-based audience. We will be working with our International Advisory Board to involve local experts in each location to make these presentations more personal and have a lasting impact.

The implementation of the PABI Plan will change the world for millions of families who have a child or young adult suffering from a brain injury as well as preventing these injuries from occurring in the first place! In addition to implementing the PABI Plan, our mission is to advance our knowledge of the brain 50 years in the next five!

We are now accepting resumes for several positions involved in this tour. If you know anyone who is interested in applying for one of these positions, please ask them to follow these three simple instructions:

They should read my recent letter to Sarah Jane when she turned five which gives a good summary of what/why we are doing at The Sarah Jane Brain Foundation: www.TheBrainProject.org/lettertosarah...
They should email a cover letter explaining why they want to "change the world" for these families, what position they are applying for and a copy of their resume/CV to Jen Glaser: jen@thebrainproject.org
They should send a "friend request" to me (Patrick B. Donohue) on Facebook and join The Sarah Jane Brain Foundation cause on Facebook

Director of Special Events: The Director of Special Events will be an experienced planner to coordinate the national tour. This is a full-time job with a minimum six month commitment. The event coordinator will be the “team leader” for contacts in multiple cities, as well as for the core team of experts who will be presenting a youth sports concussion information session in schools across the country. The event coordinator will need to be able to think on their feet, juggle many different projects at once, be a strong representation of our organization, and be aware of the importance of the organization’s message. This position will work out of our headquarters in New York City. Annual salary commensurate with experience (range: $35,000-$50,000 plus benefits)

Traveling Positions: (please keep in mind these positions will be traveling for six months with their meals and lodging covered)

Director of Public Affairs: The Director of Public Affairs will be a tireless worker with a great attitude and a background in public relations and/or politics to work on a large-scale national event for a minimum of six months. The Director of Public Affairs will coordinate media outreach across the country, handle all promotion in advance of the arrival in each city, field all media questions, orchestrate press conferences on-site, and write press releases. The Director of Public Affairs will also be responsible for the political outreach and the coordination with the public affairs offices in political offices across the country. This is a full-time job that requires six-months of traveling all over the country in an RV. The Director of Public Affairs is an essential part of the team and will be representing the organization and the cause in cities all over the country. Annual salary commensurate with experience (range: $30,000-$40,000 plus benefits)

Assistant Director of Special Events: The assistant director of special events will be the on-site coordinator for all of the seminars and events in each city. The assistant director of special events will work closely with the Director of Special Events who will be doing coordinating from our headquarters in New York. A background in event planning, marketing, or public relations is preferred but not required. This position requires a six month commitment and will involve travel all over the country. Qualified applicants will need a valid driver’s license and a clean driving record as they will be needed to relieve the driver should it be necessary. There will be an opportunity to transition into a full-time position after six months. Weekly salary commensurate with experience (range: $400-$550/week plus benefits)

Driver/Production Assistant: The position will require a minimum six-month commitment. The driver/production assistant will need to be comfortable driving a 40-foot RV for long stretches of time, have a clean driving record, and a valid United States driver’s license. The production assistant part of the job will involve crowd control at events, managing street teams, setting up for press conferences, and watching the RV during presentations. There will be an opportunity to transition into a full-time position after six months. Weekly salary commensurate with experience (range: $400-$550/week plus benefits)

Intern positions: Intern positions will also be available - please contact our office directly for more information on these availabilities. There will be one full-time traveling internship position available with the person needing to commit to be traveling from late January through the end of June.

We will be announcing more details of the National PABI Tour soon!

Voice For My Child - Become Part Of This National Movement

2010-12-02T14:46:00.004-05:00

About Us
Who are we?

We are parents of children or young adults who are suffering from the #1 cause of death and disability for American youth: a brain injury. Some of our kids are severely disabled due to the brain injury, some of our kids were killed because of the brain injury and some of our kids appear to be highly functioning after the brain injury yet there are still unseen effects – it’s “the silent epidemic”.

We are Americans who have a brain injury. We live, work and play in every community across the country.

We may have acquired our brain injury from traumatic events such as (these are examples):
Motor vehicle crash
Blast injury from war
Sports-related concussion/brain injury
Fall or blow to the head
Child abuse / Shaken Baby Syndrome / Abusive Head Trauma
Gunshot wound

We may also have acquired our brain injury due to non-traumatic causes such as (these are examples):
Stroke
Brain tumor
Meningitis
Insufficient oxygen
Near-drowning

We are friends and family of Americans suffering from a brain injury.

We are professionals who work with brain-injured Americans.

We are your neighbors, your co-workers, your classmates!

All of our lives have been forever changed due to one brain injury.

The system of care for the millions of American families dealing with brain injury is arbitrary from state to state, random from school district to school district and completely haphazard from one doctor’s office to the next.

EVERY 40 Seconds an American youth enters an Emergency Department suffering from a NEW brain injury due to trauma (and this doesn’t even include all of the undiagnosed brain injuries or the non-traumatic brain injuries). EVERY TIME this happens to another American family, that family is stuck reinventing the wheel (the system of care for their child and family).

We have a plan to develop a seamless, standardized, evidence-based system of care that is universally accessible for the millions of American families dealing with a brain-injured youth. This first-ever National Pediatric Acquired Brain Injury Plan (PABI Plan) was created and supported by many of the leading experts in the field as well as affected families from all across the country.

We are working to implement this PABI Plan by educating our elected officials as well as the related federal, state and local governmental officials who oversee the current arbitrary and random systems of care. We will also hold our government accountable and educate our communities about their actions or lack of actions.

WE would like YOU to become part of this national movement.

To become a VOICE FOR MY CHILD Click here www.voiceformychild.com

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org

Voice For My Child

2010-11-29T18:16:00.008-05:00

EVERY 40 Seconds an American youth enters an Emergency Department suffering from a NEW brain injury due to trauma (and this doesn’t even include all of the undiagnosed brain injuries or the non-traumatic brain injuries).

EVERY TIME this happens to another American family, that family is stuck reinventing the wheel (the system of care for their child and family.

My name is Craig Sears; I was in a motor vehicle accident in 1987, leaving me with a traumatic brain injury (TBI). After suffering a brain injuries, as like most survivors’ do. I have been faced with many new and overwhelming challenges in everyday living. As a survivor of a brain injury my journey made me all-too familiar with the difficulties of individuals and families working through the arbitrary system of care.

There are a lot of misconceptions about Traumatic Brain Injury, and most people don't comprehend that there isn't a lot of help out there for children and young adults with TBI. There is no health assistance for us -- Is this really the American way?

Going through the aftermath of my TBI, I teamed up with The Sarah Jane Brain Foundation to help promote the need for a national PABI medical plan, a proposed system of care that would be universally accessible for all for all children, and their families, regardless of where they live in the nation. A traumatic brain injury is not a mental illness, It is an Injury, Injuries require care, care that we all need, care that this plan can provide.

Please do not judge persons with brain injuries based on me, every brain injury and survivor are different, I consider myself to be a very fortunate brain injury survivor, to be a “VOICE” for those forgotten children and families.

We need as many voices as possible to send a clear message to our elected officials that it is time to implement the National Pediatric Acquired Brain Injury Plan

Please, join us today and become a “VOICE FOR MY CHILD” and together we will be able to change the system of care for the millions of these American families.

To my knowledge, parents should be able to keep their children from harms way, but sometimes bad things just happen. They are out of our control. This is why the goal of the mission of “Voice for my Child” is so very important.

As a survivor of a brain injury myself; I wish there had been a National Pediatric Acquired Brain Injury Plan in place when my injury occurred. If there had been such a plan in place, my life and my family’s lives would be completely different today.

Quick Facts

The Sarah Jane Brain Foundation is named for Sarah Jane Donohue, a 5 year old New York girl who was shaken by her baby nurse when she was just 5 days old. Her father, Patrick Donohue, now spearheads a national effort to standardize the way brain injuries are treated for our children. I've been proud to stand up with Patrick & Sarah Jane in Washington, D.C., and other cities across the country, to raise awareness on this issue.
Voice For My Child is a 501c4 organization advocating for the nationwide implementation of the National PABI Plan.

◦PABI = Pediatric Acquired Brain Injury

◦PABI is the #1 cause of death and disability for children and young adults in the United States

◦Causes of PABI can be both Traumatic Brain Injury (TBI) as well as non-traumatic brain injury (ABI)

■TBI causes: falls, motor vehicle incidents, sports concussions, blast injuries from war, violence/assault/child abuse/shaken baby syndrome, gunshot wounds, bicycle accidents, or anything else resulting in trauma to the head

■Non-traumatic causes: brain tumors, meningitis, strokes, high fevers, lack of oxygen such as in near-drowning incidents or due to difficulty breathing after birth, poisoning, ischemia and substance abuse

■More than 3,000,000 new pediatric brain injuries ranging from "mild" to severe occur every single year in the United States alone

◦Over 1,000,000 are hospitalized each year due to Pediatric TBI

◦Over 17,000 annually incur a permanent disability due to Pediatric TBI

◦Over 5,000 deaths occur annually due to Pediatric TBI

IF YOU WOULD LIKE TO ENCOURAGE ALL THE FAMILIES ACROSS THE COUNTRY TO VOICE THIER OPINION ON WHAT THE PABI PLAN WOULD MEAN TO YOUR FAMILY PLEASE POST A VIDEO OR A WEB BLOG STATING YOUR OPINION!!!!! TODAY!!!

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org

"Voice For My Child” Raising awareness about traumatic brain injuries

2010-11-05T13:30:00.001-04:00

Staff Writer

More than 20 years ago, resident Craig Sears was in a motorcycle accident, leaving him with a traumatic brain injury (TBI). Since then, Sears says he has faced many challenges, and he wants to make sure that future generations of children with TBI never have to go through what he did.

"I was arrested, hospitalized and treated with no respect due to my brain injury, and because I have a traumatic brain injury, there is no health assistance for me -- is that really the American way?" said Sears. "The brain injury community is very small -- nobody wants to talk about it. But I'm being a voice for everyone."

Sears is now an advocate for the first-ever National Pediatric Acquired Brain Injury (PABI) plan, a proposed system of care that would be universally accessible for all children, young adults and their families, regardless of where they live in the nation. The plan was drafted in 2009 by "Voice for my Child" -- a group of parents who have children with pediatric acquired brain injuries -- and The Sarah Jane Brain Foundation.

The Sarah Jane Brain Foundation, based in New York City, was created by the father of Sarah Jane -- a girl who has had a pediatric acquired brain injury since she was five days old -- and elected officials.

According to the Sarah Jane Brain Project's website, causes of PABI include both TBI -- which includes falls, motor vehicle incidents, sports concussions, blast injuries from war, violence, assault, child abuse, shaken baby syndrome, gunshot wounds and bicycle accidents -- and non-traumatic brain injuries, such as brain tumors, meningitis, strokes, high fevers, or lack of oxygen due to near-drowning incidents or difficulty breathing after birth, poisoning and substance abuse.

Sears said there are a lot of misconceptions about traumatic brain injuries, and most people don't realize there isn't a lot of help out there for children with TBI.

"A traumatic brain injury is not a mental illness," said Sears. "Injuries require care, care that we all need, care that this plan can provide."

On Oct. 13, 2009, House bill 198 was introduced by U.S. Rep. G.K. Butterfield, D-N.C., along with 47 original co-sponsors.

The bill states that Congress should recognize PABI is the leading cause of death and disability in the United States for children and young adults up to 25 years of age. It also endorses the PABI plan as the method to help prevent future PABI cases and treat all children and young adults suffering from PABI, while also supporting their families and encouraging all federal, state and local governments to implement the PABI plan.

Ken Willis, communications director for Congressman Butterfield, said the issue is important because it affects thousands of people in the country.

"One thing that members of Congress can do is highlight an important issue like this one and introduce it as a resolution," said Willis.

Since March, the bill has received more than 100 bi-partisan co-sponsors from 40 different states -- enough sponsors for the measure to be put before the House's U.S Energy and Commerce Committee.

According to Willis, the plan has been held up recently by re-elected Congressman Frank Pallone, D- N.J., who heads the Energy and Commerce Committee's Subcommittee on Health, along with other committee members who are asking for the wording to be changed on the plan. Willis said the subcommittee has to approve the resolution before anything else can happen.

Pallone didn't return calls for this story.

Sears said he hopes bill 198 is resolved in the near future. The plan is very important to those children who have brain injuries and their families, he said, because it will gives them a voice and the help they need.

"People with traumatic brain injuries need their voices heard," said Sears. "For myself, I wish there was a PABI plan 21 years ago. My life would have been a lot different."

For more information on the PABI plan, go to www.voiceformychild.com or www.myspace.com/searscraig.

The “Voice For My Child” team just handed out thousands of flyers at black and hispanic churches etc, in Piscataway & Plainfield, right in the heart of Frank Pallone territory (we were amazed at all of the Anna Little signs) a great response so far!

2010-11-01T12:25:00.004-04:00

Every 9 ½ minutes
an American is infected with
HIV
And the federal government invests
More than $3 BILLION
Annually towards HIV/AIDS research

Every 40 SECONDS
an American youth enters an emergency department with a new
Brain Injury
And the federal government invests
Less than $100 MILLION
Annually towards brain injury research for our children and young adults

Brain Injury is the #1 cause of death and disability for American Youth

Congressman Frank Pallone:
Either A) Doesn’t care about American families who have a child/young adult with a brain injury, or B) He is so arrogant he thinks he knows better than the leading brain injury experts

Congressman Frank Pallone:
Continues to Block H. Con. Res. 198 from an up-or-down vote! H. Con. Res. was introduced by Congressional Black Caucus Secretary, Congressman G.K. Butterfield and has over 110 bi-partisan Members of Congress co-sponsoring it (including 8 Congressmen from New Jersey). This measure endorses the plan to prevent, identify and treat these brain injuries!

FACTS ABOUT BRAIN INJURY – A NATIONAL PUBLIC HEALTH CRISIS:
• 80% of our children in juvenile detention centers across America have a brain injury!

• African Americans have higher rates of brain injury than any other group!

• Brain Injury increases as poverty increases!

PLEASE BECOME A
VOICE FOR MY CHILD
and tell Congressman Frank Pallone to allow a vote for our children!

Paid for by Voice For My Child, Inc.

Does Congressman Frank Pallone really not care about families who have a child or young adult suffering from a brain injury or is he so arrogant he thinks he knows better than the leading experts?

Dear New Jersey 6th District Constituents,

When my daughter, Sarah Jane, was just five-days old, she was violently shaken by her baby nurse, breaking four ribs, both her collarbones, and causing a severe brain injury. Today she is five-years old and she still cannot crawl, walk or speak words – but one day she will. Since then, I have dedicated myself to not only Sarah Jane’s recovery and rehabilitation, but also to helping other families who have a child or young adult suffering from the #1 leading cause of death and disability of American youth: brain injury. Brain injuries can be caused by trauma (child abuse, motor vehicle crashes, sports concussions, blast injury from war) as well as non-trauma (strokes, brain tumors, epilepsy, meningitis). The numbers are staggering: millions of American youth suffer a brain injury EVERY year and every 40 SECONDS an American youth enters an Emergency Department with a NEW brain injury.

I founded the Sarah Jane Brain Foundation and we brought together the leading experts in brain injury to create the first-ever National Pediatric Acquired Brain Injury (PABI) Plan which develops a seamless, standardized, evidence-based system of care for these millions of American families. Our efforts have the support of many organizations including the American Academy of Pediatrics, the American Academy of Cerebral Palsy and Developmental Medicine and the American Academy of Neurology.

Last October, the Secretary of the Congressional Black Caucus, Congressman G. K. Butterfield introduced a measure in Congress (H. Con. Res. 198), along with 47 co-sponsors to endorse the National Pediatric Acquired Brain Injury Plan and to encourage federal, state and local governments to implement the PABI Plan. Since it was introduced it has garnered the support of more than 110 bi-partisan members of Congress, including such conservative stalwarts like Reps. Pete Sessions (R-TX) and Sue Myrick (R-NC) as well as liberal icons like Reps. Patrick Kennedy (D-RI) and Jim McGovern (D-MA). Additionally, eight bi-partisan members of the New Jersey Congressional delegation have also signed on as a co-sponsor (Rush Holt, Leonard Lance, Frank LoBiondo, Bill Pascrell, Donald Payne, Steven Rothman, Albio Sires and Christopher Smith). Yet your congressman, Mr. Frank Pallone continues to block it from an up-or-down vote in the Congress! He will not allow it to move through the Sub-committee on Health which he is the Chairman!

I have met three times with Congressman Pallone and each time he tells me, “I will look into it!” Either Mr. Pallone doesn’t care about kids with brain injuries or he thinks he knows more than the leading experts in our nation.

This is the reason we formed Voice For My Child and we are asking you to become a Voice for all the children out there suffering from brain injuries and make sure Congressman Frank Pallone hears YOUR voice!

Sincerely,
Patrick Donohue
Father of Sarah Jane Donohue and Founder of Voice For My Child

To learn more about Voice For My Child visit www.VoiceForMyChild.com and to learn all about H. Con. Res. 198 visit www.TheBrainProject.org/lettertopallone.php

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org

Voice For My Child RE: U.S. Representative Frank Pallone (D-NJ) "Tell Frank Pallone to have a heart"

2010-10-28T12:13:00.004-04:00

Every 40 seconds an American child or young adult enters an emergency department suffering from a brain injury; the leading experts in our nation dealing with brain injuries have come up with a broad-based, bi-partisan plan to prevent, identify and treat our American youth with over 110 Membersof Congress already endorsing it; however Democratic Congressman Frank Pallone from New Jersey and a few of his colleagues on the Energy and Commerce Committee refuse to even allow an up-or-down vote. We are asking you to join our efforts and become a Voice For My Child and urge Congressman Pallone to allow H. Con. Res. 198 an up-or-down vote in the Congress!

181 Broadway – Suite 300
New York, NY 10007
(212) 201-0599
www.TheBrainProject.org

LETTER VIA FACSIMILE/EMAIL: Tuesday, January 20, 2009 @ 12:01 p.m.

President Barack Obama
The White House
1600 Pennsylvania Avenue, N.W.
Washington, DC 20500

Dear Mr. President:

Like all Americans, I want to congratulate you and wish you much success. It is very appropriate that the first letter sent to you as President addresses one of the most critical issues facing your new Administration: catastrophic health care reform.

Not only am I writing to you as our President, but I am writing to you as a father.

My three-year-old daughter, Sarah Jane, was violently shaken by her baby nurse when she was only five days old, breaking three ribs, both collarbones and causing a severe brain injury. Since that day, our family has joined the millions of other families across the country whose child suffers from a pediatric acquired brain injury (PABI).

As you may know, PABI is the #1 leading cause of death and disability for children and young adults in the United States, and the adolescent brain doesn’t finish developing until age 25. PABI is caused by traumatic events such as motor vehicle accidents, sports-related accidents, blast injuries from war, assaults/child abuse as well as falls, along with non-traumatic causes such as strokes, brain tumors, pediatric AIDS, meningitis, infection, substance abuse and many others.

Until today, there has never been a National Pediatric Acquired Brain Injury Plan. The Sarah Jane Brain Foundation (named after my daughter) recently assembled the nation’s leaders in PABI, and together they co-authored the First Draft of the National PABI Plan. With over 1,000 years of combined experience, these experts outlined the current national health care crisis dealing with PABI along with its problems and proposed solutions. As of 12:01 p.m. today, you can view the National PABI Plan on our website at www.TheBrainProject.org. We are calling upon every stakeholder in the field of PABI from around the world to comment and make suggestions to this document by February 6, 2009.

Once the National PABI Plan has been finalized following the public comment period, we will be drafting the Pediatric Acquired Brain Injury Act of 2009. The PABI Act will ask Congress to establish Centers of Excellence in every state to ensure this National PABI Plan is funded, followed and fulfilled.

• If I were to tell you the United States Department of Defense does not have a specific plan distinguishing the veterans with traumatic brain injury whose brains are still developing (up to age 25) from those who have adult brains; you would say not in MY America.

• If I were to tell you a child who was shaken at seven weeks old would not receive a medical evaluation for therapy services for nine months; you would say not in MY America.

• If I were to tell you high school football players have died on the field playing the sport because of an undetected brain injury; you would say not in MY America.

• If I were to tell you the top 20 Pediatric Neurosurgery Departments in our nation do not have a common, evidenced-based methodology for treating a child who suffered a head trauma; you would say not in MY America.

• If I were to tell you there has never been a best-practices study or a longitudinal study in our nation for treating children and young adults with PABI; you would say not in MY America.

This is just the tip of the iceberg in OUR America for children/youth and their families suffering from PABI. Over 3,000,000 children/youth suffer from a PABI each year with most of them going undetected and therefore untreated. Tens of thousands are permanently disabled and thousands of our most innocent Americans die annually due to PABI.

Passing and implementing the PABI Act of 2009 is not only the compassionate and proper action to take, but it will also address many of your significant health care reform items along with the issues listed above. The financial savings from passing such catastrophic health care reforms will be in the billions. The emotional savings are immeasurable.

I look forward to working with you and your Administration in dealing with the national health care crisis called Pediatric Acquired Brain Injury. Please let me know with whom in your office we should coordinate our efforts.

Most respectfully yours,

Patrick B. Donohue, Esq.
Founder of The Sarah Jane Brain Foundation and father of Sarah Jane Donohue

P.S. We are planning a very large birthday party for Sarah Jane on June 5, 2009, to celebrate the passing of the PABI Act and it would be an honor to have you sign this historic piece of legislation at her party!

P.P.S. There are those who tell me we cannot get this done before June 5, 2009. I am inspired and follow our nation’s new leader in saying, “Yes we can!”

CC: Vice-President Joseph Biden
The Honorable Thomas Daschle
The Honorable Harry Reid
The Honorable Nancy Pelosi
The Honorable Mitch McConnell
The Honorable Steny Hoyer
The Honorable John Boehner
The Honorable Rahm Emanuel
Deputy Director Jeanne Lambrew

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org

Stop Congressman Representative Frank Pallone (D-NJ6) from blocking H. Con. Res. 198 from coming to a vote. Join “VOICE FOR MY CHILD”. Tell Frank Pallone to have a heart www.VoiceForMyChild.com

2010-10-26T14:01:00.003-04:00

Every 40 seconds an American child or young adult enters an emergency department suffering from a brain injury; the leading experts in our nation dealing with brain injuries have come up with a broad-based, bi-partisan plan to prevent, identify and treat our American youth with over 110 Membersof Congress already endorsing it; however Democratic Congressman Frank Pallone from New Jersey and a few of his colleagues on the Energy and Commerce Committee refuse to even allow an up-or-down vote. We are asking you to join our efforts and become a Voice For My Child and urge Congressman Pallone to allow H. Con. Res. 198 an up-or-down vote in the Congress!

Summary of H. Con. Res. 198
Every year millions of American children and young adults up to 25 years of age acquire a new brain injury which makes it the #1 leading cause of death and disability by far (i.e., the total cumulative cases of autism in the entire country is between 565,000 – 1.2 million). Every time this happens to a family they are stuck having to reinvent the system of care for their child and family. The system of care is arbitrary from state to state, random from school district to school district and completely haphazard from one doctor’s office to another.

The causes of Pediatric Acquired Brain Injury can be from trauma (such as motor-vehicle crashes, falls, sports-related concussions, child abuse/shaken baby syndrome, blast injury from war, etc…) as well as non-traumatic causes (such as strokes, meningitis, brain tumors, near-drownings, etc…).

The Sarah Jane Brain Foundation (SJBF) brought together more than 75 of the leading doctors, researchers and family advocates to New York City the first week of January 2009, to complete 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 these PABI families.

In June 2009, SJBF announced the largest healthcare collaboration in U.S. history dealing with PABI by announcing one State Lead Center for every state plus D.C. and Puerto Rico to develop a Master PABI Plan for their respective state (since every state is different). While expanding the International Advisory Board to over 200 experts worldwide, SJBF also received letters of support about the PABI Plan from the American Academy of Pediatrics, the American Academy of Cerebral Palsy and Developmental Medicine and the American Academy of Neurology.

Having established a national professional and family consensus around the PABI Plan, the next step was creating a national political consensus around the PABI Plan. SJBF had already begun receiving letters of support from US Senators (Cornyn, Kerry, McCain, Inhofe, Landrieu, Lieberman, etc…) and many US Representatives from across the country.

On October 13, 2009, H. Con. Res. 198 was introduced by Rep. G.K. Butterfield (D-NC1) along with 47 original co-sponsors. H. Con. Res. 198 was referred to the House Energy and Commerce Committee and SJBF was instructed we needed to secure 100 co-sponsors (20 of them from E/C Committee) in order for the measure to move through the E/C Committee and be afforded and up-or-down vote in the full House.

H. Con. Res. 198 states the following, “Resolved by the House of Representatives (the Senate concurring),That Congress –

1. Recognizes that Pediatric Acquired Brain Injury (PABI) is the leading cause of death and disability in the United States for children and young adults up to 25 years of age;

2. Endorses the National Pediatric Acquired Brain Injury Plan as the method to prevent future PABIs and treat all children and young adults suffering from a PABI while supporting their families; and

3. Encourages all Federal, State and local governments to implement the PABI Plan.

Since March 4, 2010, H. Con. Res. 198 has had over 100 bi-partisan co-sponsors from 40 different states (20 from the E/C Committee). Since then, Representative Frank Pallone (D-NJ6) who is the Subcommittee Chairman on Health and several other Members and their staff have been holding the measure up by demanding that the wording be changed to completely gut the original intent of the measure: create a national political consensus around the PABI Plan!

For greater details on the history of H. Con. Res. 198, please visit www.TheBrainProject.org/lettertopallone.php

Click here to read the full-text of H. Con. Res. 198

I Craig Sears a traumatic brain injury survivor Together with VOICE FOR MY CHILD will be holding accountable the following Members of the U.S. House Energy and Commerce Subcommittee on Health who are refusing to allow an up-or-down vote on H. Con. Res. 198:

U.S. Representative Frank Pallone (D-NJ), Chairman - first TV commercial focusing on Mr. Pallone: click here
U.S. Representative Bruce Braley (D-IA)
U.S. Representative Lois Capps (D-CA)
U.S. Representative Kathy Castor (D-FL)
U.S. Representative John Dingell (D- MI)
U.S. Representative Eliot Engel, (D-NY)
U.S. Representative Charlie Gonzalez (D-TX)
U.S. Representative Jim Matheson (D-UT)
U.S. Representative Chris Murphy (D-CT)
U.S. Representative Mike Ross (D-AR)
U.S. Representative John Sarbanes (D-MD)
U.S. Representative Zack Space (D-OH)
U.S. Representative Betty Sutton (D-OH)
U.S. Representative Anthony Weiner (D-NY)

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org

Congressional candidates Anna Little and Frank Pallone from the 6th district face off in a debate sponsored by Temple Shalom, 7 pm Sunday, Oct. 17 at the Temple, 5 Ayrmont Lane, Aberdeen, NJ.

2010-10-18T10:54:00.004-04:00

My name is Craig Sears I am an adult PABI survivor I was at the Congressional candidates Anna Little and Frank Pallone debate sponsored by Temple Shalom, 7 pm Sunday, Oct. 17 at the Temple, 5 Ayrmont Lane, Aberdeen, NJ. Congressman Pallone. I will say this, You are arrogant! you have the audacity to speak about healthcare reform when you are personally blocking a national political consensus dealing with the number one leading cause of death and disability for our children and young adults - Pediatric Acquired Brain Injury Act (H. Con. Res. 198)

"Why are you Congressman Frank Pallone holding up the most broad-based, bipartisan healthcare initiative of this entire Congress," "As Chairman of the Health Subcommittee of the Energy and Commerce Committee, you have the power to move this legislation. More than a hundred Members of Congress of both parties have already co-sponsored this legislation, and yet it’s been sitting in "your" subcommittee for almost a year.

PABI is the leading cause of death and disability for children and young adults from birth through 25 years of age in the United States. Over 5, 000 deaths occur annually due to PABI, over 17, 000 annually suffer from permanent disability due to PABI, and over 1, 000, 000 are hospitalized each year due to PABI. In addition, since most brains aren't fully developed until age 25, many of the Military Veterans returning from Iraq and Afghanistan with TBI are actually considered PABI. Pediatric Acquired Brain Injuries (PABI) include all traumatic causes plus brain injuries caused by brain tumors, strokes, meningitis, insufficient oxygen, poisoning, ischemia and substance abuse.

The more I think about Congressman Frank Pallone (D-NJ6), holding up the most broad-based, bi-partisan healthcare initiative in the entire Congress,” the more I realize as a survivor of TBI - Voice, I feel that not only is it an insult to those Members of Congress who have already signed on as a co-sponsor, This is also very much of an insult to me and every, brain, injury, survivor, veteran, children, young adult, in the United States.
For myself, I wish on that July afternoon 20 years ago, that there was a national PABI plan in place. I wish that the States, 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

TBI, is "NOT" a mental illness. It is a injury. Injuries require care.

Sincerely. Craig Sears

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org

TODAY'S PRESS RELEASE: October 14, 2010 Sarah Jane's Dad Launches 501c4 "Voice For My Child" Diane Gooch Will Serve As Honorary Voice Initial Six-figure Media Campaign Focuses on Rep. Pallone (D-NJ-6)

2010-10-15T16:44:00.001-04:00

NEW YORK, NY - On the one-year anniversary date of H. Con. Res. 198 being introduced in the Congress, Patrick Donohue, father of Sarah Jane Donohue (the namesake of the Sarah Jane Brain Foundation), along with other brain injury advocates and survivors announced the launch of Voice For My Child, the first-ever national 501c4 advocacy organization whose mission is to educate public officials about the #1 leading cause of death and disability for American youth, brain injury, as well as educate the public about what these officials are doing or aren't doing to support these millions of American families. In addition, it was announced that Diane Gooch, one of New Jersey's top civic leaders, has agreed to serve as the Honorary Voice For My Child to speak out on behalf of these families.

Voice For My Child also announced its first six-figure media campaign that will focus on Democratic Congressman Frank Pallone (NJ-6) who is blocking H. Con. Res. 198 from an up-or-down vote in the Congress. As Chairman of the Energy and Commerce Health Subcommittee, Mr. Pallone will not allow the measure, which already has over 110 Members serving as co-sponsors, to move through his Committee. Once we launch the media campaign focusing on Mr. Pallone, Voice For My Child will focus on several of his colleagues on the Energy and Commerce Committee who are standing with Mr. Pallone instead of the millions of families who have a child or young adult suffering from a brain injury.

"Congressman Frank Pallone is ignoring the wrong five-year-old, brain-injured, little girl (Sarah Jane) and he and his colleagues must be held accountable for their actions," said Patrick Donohue, father of Sarah Jane Donohue and founder of Voice For My Child. "As the parent of a brain-injured American youth, it is my job to be a Voice For My Child and we are asking other citizens to become part of this national movement."

"I am proud to serve as the Honorary Voice for these millions of American families and I will help amplify their voices by encouraging other Americans to join Voice For My Child too," said Diane Gooch, Honorary Voice For My Child. "On the one-year anniversary of the most broad- based, bi-partisan healthcare initiative it is horrendous for Congressman Frank Pallone and several of his colleagues on the Energy and Commerce Committee to hold up such a meaningful measure. Shame on Frank!" Diane Gooch is the publisher of the Two River Times in New Jersey.

"As a Voice For My Child, I am grateful for my friends, neighbors and fellow citizens who are joining this national movement," Natalie Forberg said. "Together, we will not only recognize our public officials who support our families, but also hold accountable those that stand in the way of progress." Natalie is the mother of 17-year-old Tayler who suffered a brain injury in a motor vehicle crash when she was 12-years-old.

"Every 40 SECONDS an American child or young adult enter an emergency department suffering from a brain injury. The National Pediatric Acquired Brain Injury Plan is the most comprehensive, collaborative plan to prevent, identify and treat the #1 leading cause of death and disability for American youth, which is brain injury," said Darryl Gibbs. "My daughter's death was preventable and so are most of these brain injuries." Darryl is the father of Cynthia who was violently shaken and killed by a licensed daycare provider when she was only 8 months old. He is the founder of the Cynthia Gibbs Foundation.

"I wish there was a National Pediatric Acquired Brain Injury Plan in place twenty years ago when I suffered from a severe brain injury and spent six months in a coma," said Craig Sears. "I am happy to be part of Voice For My Child and to continue educating the public about brain injury." Craig survived a motor vehicle crash when he was 20-years old and has become a national brain injury advocate.

"We want to recognize public officials who listen and then act, not act like they are listening," said Roxann Romano. "By joining Voice For My Child, Americans can be part of this national effort to implement the most broad-based, bi-partisan healthcare initiative dealing with the #1 leading cause of death and disability for American youth: brain injury." Roxann is the mother of 19-year- old John who suffered a brain injury due to a motor vehicle crash when he was ten years old.

To learn more about Voice For My Child, please visit www.VoiceForMyChild.com.

For a complete history of H. Con. Res. 198 please read the recent letter to Congressman Frank Pallone from the Steering Committee of the International Advisory Board of the Sarah Jane Brain Foundation: www.TheBrainProject.org/lettertopallone.php.

To read the entire National Pediatric Acquired Brain Injury Plan, please visit: www.TheBrainProject.org/pabihome.php.

#####

RED BANK, NJ Congressman Frank Pallone, Jr. Cannon House Office Building Room 237 Washington, D.C. 20515-3006

2010-10-03T11:50:00.010-04:00

The more I think about Congressman Frank Pallone (D-NJ6), holding up the most broad-based, bi-partisan healthcare initiative in the entire Congress,” the more I realize as a survivor of TBI - Voice, I feel that not only is it an insult to those Members of Congress who have already signed on as a co-sponsor, This is also very much of an insult to me and every, brain, injury, survivor, veteran, children, young adult, in the United States!

PABI is the leading cause of death and disability for children and young adults from birth through 25 years of age in the United States. Over 5, 000 deaths occur annually due to PTBI, over 17, 000 annually suffer from permanent disability due to PABI, and over 1, 000, 000 are hospitalized each year due to PABI. In addition, since most brains aren't fully developed until age 25, many of the Military Veterans returning from Iraq and Afghanistan with TBI are actually considered PABI. Pediatric Acquired Brain Injuries (PABI) include all traumatic causes plus brain injuries caused by brain tumors, strokes, meningitis, insufficient oxygen, poisoning, ischemia and substance abuse.

I can honestly say for myself, I wish on that July afternoon 22 years ago, that there was a national PABI plan in place. I wish that the States, 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.

Sincerely

Craig Sears A Voice For Traumatic Brain Injury

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org
www.thebrainproject.org

LITTLE ENDORSES ACTION FOR PEDIATRIC BRAIN INJURY

2010-10-01T14:08:00.003-04:00

RED BANK, NJ - Republican congressional challenger Anna Little -- endorsing legislation recognizing Pediatric Acquired Brain Injury as the leading cause of death and disability for children and young adults, and endorsing the National Acquired Brain Injury Plan, which her opponent, 22-year incumbent Democrat Frank Pallone, has been blocking from an up-or-down vote in the Congress -- today challenged Pallone to move the legislation out of his Energy and Commerce Committee Health Subcommittee.

At a press conference at Anna Little for Congress headquarters, Sarah Jane Donohue - the five-year-old namesake of The Sarah Jane Brain Foundation - announced her enthusiastic support for Anna Little for Congress. Several of Sarah Jane’s friends, also stricken with brain injuries, also announced their support for Little.

"Frank Pallone is wrong to hold up the most broad-based, bipartisan healthcare initiative of this entire Congress," said Little. "As Chairman of the Health Subcommittee of the Energy and Commerce Committee, he has the power to move this legislation. More than a hundred Members of Congress of both parties have already co-sponsored this legislation, and yet it’s been sitting in his subcommittee for almost a year."

She continued, "He has the audacity to speak about healthcare reform, when he is personally blocking a national political consensus dealing with the number one leading cause of death and disability for our children and young adults - brain injury. I support H. Con. Res. 198, and as a Member of Congress next year, I look forward to working with families and professionals who deal with pediatric acquired brain injury to better prevent, identify and treat this disease."

"The Brain Injury Association of New Jersey enthusiastically supports the Pediatric Acquired Brain Injury Act (H. Con. Res. 198)," says Barbara Geiger-Parker, President and CEO of the Brain Injury Association of New Jersey. "We hope Congress passes this measure as soon as possible." The Brain Injury Association of New Jersey is the Sarah Jane Brain Project’s State Lead Center of Excellence for New Jersey, and it was involved in the development of the National Pediatric Acquired Brain Injury Plan (PABI Plan).

Patrick Donohue, father of Sarah Jane Donohue - a five-year-old victim of traumatic brain injury suffered when she was violently shaken by her nurse when she was just a baby - said, "It is pretty clear Congressman Frank Pallone either doesn't care about kids with brain injuries, or he is so arrogant he thinks he knows better than the leading experts in the country. That's why I support Anna Little and I encourage all of my friends and family to do the same."

Jennipher Dickens - mother of four-year-old Christopher Daughtrey, who, like Sarah Jane Donohue, is a victim of traumatic brain injury suffered as a result of abuse - joined Donohue in endorsing Little over Pallone. "Frank Pallone has had almost an entire year to move this important legislation, and he's failed to do so. That's just wrong."

Craig Sears - a survivor of a brain injury caused by a motor vehicle crash when he was but 20 years old - also endorsed Little. "Frank Pallone should be ashamed of himself! As a survivor of a brain injury myself, I wish there had been a National Pediatric Acquired Brain Injury Plan in place when my injury occurred. If there had been such a plan in place, my life and my family’s lives would be completely different today. We need people like Anna Little who actually listen and act as opposed to merely acting like they are listening. That's why I support Anna Little!"

"It is time to hold our politicians accountable and that is what we are doing today," said Kim Illions, mother of five-year-old Cole Illions, who suffers from pediatric hydrocephalus. "On behalf of my son, Cole, and on behalf of the many families in the sixth congressional district of New Jersey who have a child with a brain injury, we support Anna Little!" Kim Illions is the coordinator of the largest New Jersey support group for pediatric hydrocephalus. Their family resides in Iselin, New Jersey.

WHEN: Thursday, September 30, 2010 at 10:45 a.m.

WHERE: Anna Little Headquarters, 64 Bridge Avenue, Red Bank, NJ 07799

For more information about Anna Little, please visit www.AnnaLittleForCongress.com.

For the complete history and facts about H. Con. Res. 198 please visit www.TheBrainProject.org/lettertopallone.php and to learn more about the Sarah Jane Brain Foundation please visit www.TheBrainProject.org/lettertosarahjane.php

Letter to Rep. Frank Pallone from Sarah Jane Donohue

2010-09-25T11:32:00.002-04:00

PUBLIC LETTER via HAND-DELIVERY by Sarah Jane Donohue
Congressman Frank Pallone, Jr.
Cannon House Office Building
Room 237
Washington, D.C. 20515-3006

September 8, 2010

Dear Congressman Pallone;

We are writing to you today as Members of the Steering Committee of the International Advisory Board of the Sarah Jane Brain Foundation to express our concern over the manner in which H. Con. Res. 198 is being handled by you and your staff on the Energy and Commerce Committee and request immediate action by you personally.

The main purpose of H. Con. Res. 198 was to create a political consensus around a plan developed and endorsed by the leading experts from across the country dealing with pediatric acquired brain injury (PABI). With over 110 Members of Congress already endorsing the National Pediatric Acquired Brain Injury Plan (PABI Plan) through their co-sponsorship of H. Con. Res. 198, the proposed gutting of this measure is an insult to those Members who have already signed on as a co-sponsor! In addition, your staff has grossly misrepresented the response of the Centers for Disease Control about the PABI Plan as justification for significantly altering the meaning of H. Con. Res. 198.

As Chairman of the U.S. House of Representatives Energy and Commerce Subcommittee on Health, we are asking today that you publicly commit to having the originally-introduced H. Con. Res. 198 move through the Energy and Commerce Committee upon return from your summer recess next week and allow an up or down vote immediately in the House of Representatives! We think it is very important for the millions of families and professionals across the country who are dealing with pediatric acquired brain injuries every day to know where you stand and other Members of Congress stand on developing a seamless, standardized, evidence-based system of care that is universally accessible for all Americans. We already know where over 110 Members stand on this issue: they endorse the PABI Plan!

According to statistics accumulated from the Centers for Disease Control, pediatric acquired brain injuries are the leading cause of death and disability for American children and young adults from birth through 25 years of age. You have already met twice with the founder of the Sarah Jane Brain Foundation, Patrick Donohue, who named the organization after his five-year-old daughter, Sarah Jane, who suffers from an acquired brain injury due to being violently shaken by her baby nurse when she was just five-days-old, breaking four ribs, both collarbones and causing the severe brain injury. You have told him on both occasions you would look into the matter and get back to him. To date, you have not!

In October 2007, the Sarah Jane Brain Foundation was launched and it has quickly grown into one of the leading organizations in the country dealing with pediatric brain injuries with over 200 International Advisory Board Members from just about every major medical institution (from MD Anderson and Johns Hopkins to Mayo Clinic and Children's Specialized Hospital) and Research University (from Harvard and Yale to UCLA and Rutgers College). Over 75 Members of the Advisory Board came to New York City in January 2009 to create the first-ever (and only) National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care, universally accessible for the millions of children and young adults with a PABI regardless of where they live in the nation. Our efforts have garnered the gold standards of support, including the American Academy of Pediatrics, the American Academy for Cerebral Palsy and Developmental Medicine as well as the American Academy of Neurology!

On June 5, 2009 (Sarah Jane's 4th birthday), we announced the largest healthcare collaboration in United States history dealing with PABI: one institution/organization in all fifty states plus the District of Columbia and Puerto Rico was selected as the SJBF State Lead Center of Excellence to develop and implement a Master PABI Plan for their respective state/territory. For example, Children's Hospital Boston/Harvard Medical School was selected for Massachusetts, Mount Sinai for New York, Mayo Clinic for Minnesota, Kennedy Krieger/Johns Hopkins for Maryland and UCLA for California. The SJBF State Lead Center of Excellence for New Jersey is the Brain Injury Association of New Jersey, which you are aware is not only one of the best state brain injury associations but is comprised of the leading experts throughout the state of New Jersey dealing with brain injuries.

The President of the American Academy of Pediatrics (AAP), Dr. David T. Tayloe, in his 2009 letter to support the efforts of the Sarah Jane Brain Foundation said, "There is a need to develop a comprehensive approach to the prevention, evaluation and treatment of pediatric acquired brain injuries." Dr. Tayloe, MD, FFAP, is the 2008-2009 Immediate Past- President of the AAP which is the nation's largest pediatric organization, with a membership of 60,000 primary care pediatricians, pediatric medical sub-specialties and pediatric surgical specialists.

Since the PABI Plan was first developed, we have held numerous briefings on Capitol Hill as well as a briefing at the White House last July to educate policy-makers and answer any questions they may have. The response was bi-partisan support of our efforts.

U.S. Senator Jim Inhofe (R-OK), wrote, "Each year, over 1 million American children suffer from some form of Pediatric Traumatic Brain Injury (PTBI). Sadly, too many times, such injuries lead to the premature loss of a child's life or a life-long disability. There is an immense need for more research to be conducted on the human brain, so the important work and information sharing facilitated by The Sarah Jane Brain Project benefits children and their families greatly. I am proud of the leadership and work that Oklahoma State University's Center for Health Science has provided within the state to address the issue of pediatric brain injury."

U.S. Senator Mary Landrieu (D-LA), wrote, "The Louisiana Health Care Quality Forum being selected as a State Lead Center is an integral first step in developing a seamless, standardized, evidence-based system of care for all children affected by Pediatric Acquired Brain Injury. With PABI known to be the leading cause of death and disability among our nation's children, I look forward to working with the Forum to both prevent these devastating injuries and to improve the lives of those families who are affected by them."

U.S. Senator Joseph Lieberman (D-CT) wrote in a letter addressed to Patrick Donohue, "Pediatric Acquired Brain Injury changed your life, as it changed your entire family's life, and yet you have persisted in your goal. I greatly admire your fortitude, your determination and your will to persevere. You have successfully rallied to make a difference in the lives of many people and we thank you for that. I wish you and The Sarah Jane Brain Foundation all the best you pursue this important work."

U.S. Representative Patrick Kennedy (D-RI1) wrote in a letter of support to Patrick Donohue and Hasbro Children's Hospital, "As the leading cause of death and disability for our children, pediatric acquired brain injury impacts not just those specific families but all of us, and we look forward to working with you to both prevent these devastating injuries and to improve the lives of those families who experience them."

As you are aware, last August, the Sarah Jane Brain Foundation, in collaboration with this national network, operationalized the PABI Plan and submitted a $930 million multi-department, multi-year federal grant proposal. This grant would create over 6,000 jobs in every state as well as cover just about every intended goal outlined in the American Recovery and Reinvestment Act of 2009.

The President of the American Academy of Neurology (AAN), Dr. Robert Griggs, MD, FAAN, in his 2010 letter of support wrote, "Pediatric acquired brain injuries are the nation's leading cause of death and disability among children and young adults, making the need for a comprehensive approach more vital than ever before. The requested ($930 million) grant would give these children and young adults access to high quality of care, as it would allow for the development of standardized approaches to the prevention and treatment of such injuries." The AAN is an association of more than 22,000 neurologists and neuroscience professionals dedicated to providing the best possible care for patients with neurological disorders.

The bi-partisan support continued with U.S. Senator John Kerry (D-MA) writing about the $930 million grant proposal, "Thousands of children with traumatic brain injuries will be treated and millions more will be protected from brain injuries as a result of this investment. The Sarah Jane Brain Project has done an incredible job of helping children and partnering with the Children's Hospital Boston/Harvard Medical Center will help them advance their efforts even further. We owe the Donohue Family a huge debt of gratitude for having the strength to turn a heartbreaking personal experience into something that has helped so many."

U.S. Senator John Cornyn (R-TX) wrote about the $930 million grant proposal, "I'm pleased the University of Texas at Dallas for Brain Health has been selected to receive this important funding. The organization's efforts to combat pediatric brain injury continue to serve as an example for Texas. This grant will help them continue with their excellent research and advancements in the future."

U.S. Representative Carol Shea-Porter (D-NH1) wrote about the $930 million grant proposal, "The Sarah Jane Brain Foundation is working with leading institutions from across the country to provide critical resources to families affected by Pediatric Acquired Brain Injury (PABI), and to collaborate with those families and institutions to improve research. I support this grant proposal because it would implement the National Pediatric Acquired Brain Injury Plan and improve the lives of children and young adults suffering from PABI."

Understanding the need for a national political consensus around such a comprehensive plan, Representative G. K. Butterfield (D-NC1), along with 47 original co-sponsors, introduced House Concurrent Resolution 198 on October 13, 2009, which states the following:
"Resolved by the House of Representatives (the Senate
concurring), That Congress -
(1) Recognizes that Pediatric Acquired Brain Injury (PABI) is the
leading cause of death and disability in the United States for children
and young adults from birth up to 25 years of age;
(2) Endorses the National Pediatric Acquired Brain Injury Plan as the
method to prevent future PABIs and treat all children and young adults
suffering from a PABI while supporting their families; and
(3) Encourages all Federal, State, and local governments to implement
the PABI Plan."

As you know, H. Con. Res. 198 was referred to the House Committee on Energy and Commerce immediately after its introduction.

The President of the American Academy for Cerebral Palsy and Developmental Medicine (AACPMD), Dr. Deborah Gaebler-Spina, MD., in her 2009 letter of support thanked Congressman Butterfield for introducing H. Con. Res. 198 and asked Congress to pass it. The AACPMD is a professional society founded in 1947 with over 1,100 members whose mission is to "Provide multidisciplinary scientific education for health professionals and promote excellence in research and services for the benefit of people with cerebral palsy and childhood-onset disabilities."

The Sarah Jane Brain Foundation was informed in October 2009 that once H. Con. Res. 198 secured at least 100 co-sponsors (with at least 20 serving on the Energy and Commerce Committee), the measure would move through the Energy and Commerce Committee and be presented to the full House for a vote on the suspension of the rules; as all concurrent resolutions which receive such broad support are afforded.

As you know, H. Con. Res. 198 has well over 100 co-sponsors (which it has had since March 2010) and is still waiting to be moved through the Energy and Commerce Committee. In addition, substantive changes have been presented to Representative Butterfield by your staff which would completely alter the original meaning and purpose of the resolution. Here are the proposed revisions (emphasis added to changes in italics and underlined):
"Resolved by the House of Representatives (the Senate
concurring), That Congress -
(1) Recognizes that Pediatric Acquired Brain Injury (PABI) is a
leading cause of death and disability in the United States for children
and young adults from birth up to 25 years of age;
(2) Endorses elements of the National Pediatric Acquired Brain Injury
Plan as the method to prevent future PABIs and treat all children and
young adults suffering from a PABI while supporting their families; and
(3) Encourages all Federal, State, and local governments to implement
elements of the PABI Plan."

These are significant alterations to a measure that already enjoys broad-based, bi-partisan support with co-sponsors from over 40 different states.

The first "proposed" change is to state pediatric acquired brain injury is "A" leading cause versus "THE" leading cause of death and disability. The numbers speak for themselves: the CDC estimates there are more than 767,225 American youth who visit the Emergency Department due to traumatic brain injuries each year; 80,715 American youth who are hospitalized due to traumatic brain injuries each year and over 11,200 American youth who die due to traumatic brain injuries each year. These numbers do not even reflect the large number of American youth who sustain a traumatic brain injury each year and never enter a hospital and are not diagnosed, or the number of American youth who suffer from non-traumatic acquired brain injuries (such as strokes, brain tumors, epilepsy, meningitis, hypoxia and many more).

These numbers are staggering when you compare them with the 35-40,000 new cases of HIV/AIDS each year or the combined cumulative cases of autism in the country which stands between 565,000 - 1,200,000, according to the CDC. To put things further into perspective, the federal research budget for HIV/AIDS every year is over $3 Billion while the entire brain injury community (if you also add adult brain injuries) receives less than $100 Million annually!

The second "proposed" change is even more significant and completely alters the purpose of the resolution. Instead of having Congress "endorse the National Pediatric Acquired Brain Injury Plan..." the revised version only "endorses elements of the National Pediatric Acquired Brain Injury Plan.." Instead of creating a national consensus around this plan, these changes make the resolution meaningless. Which elements exactly is Congress endorsing? Who decided the elements? What staff member thinks they know more about pediatric brain injury than the Advisory Board of The Sarah Jane Brain Foundation as well as the 100+ Members of Congress who have already endorsed the entire PABI Plan?

It turns out you and your staff have been relying upon an email sent from the Washington, D.C. office of the CDC about the position of Department of Health and Human Services as well as the CDC has on the PABI Plan. Dr. Ronald Savage, who is the President of the North American Brain Injury Society (NABIS), as well as a Member of the Steering Committee of the Sarah Jane Brain Foundation, has had several conversations with Mr. David Guthrie who is the Associate Director for Policy and Partnerships at the Division of Injury Response and National Center for Injury Prevention and Control at the CDC. Mr. Guthrie reviewed the PABI Plan as well as discussed it with other professionals within the CDC who deal with pediatric brain injuries and provided the following statement to Dr. Savage via email on Wednesday, August 25, 2010:

Ron: Marlena and I enjoyed talking with you last week. Marlena especially
looks forward to participating in the NABIS-NASHIA conference in
Minnesota later in October.

Thank you for the opportunity to review the National Pediatric Acquired
Brain Injury Plan. As you know, CDC's National Center for Injury
Prevention and Control (NCIPC) has been charged by Congress to focus on
traumatic brain injury (TBI) for the civilian population of all ages; we
rely on specific ICD-9 CM and ICD-10 codes for how to define a traumatic
brain injury. In addition, NCIPC's work in traumatic brain injury is in
conducting TBI surveillance, developing and disseminating prevention
education materials, and improving diagnosis and initial treatment of
patients of all ages with TBI.

Because of NCIPC's narrowly-defined scope of work for traumatic brain
injury-related activities, and our lack of expertise in TBI-related
long-term treatment and recovery, we feel that the National Pediatric
Acquired Brain Injury Plan is beyond the scope of the Injury Center's
TBI work. This is why, as part of CDC's normal processes in responding
to Congressional requests for comment on health-related legislation,
CDC provided to Congress the following comments on the National
Pediatric Acquired Brain Injury Plan and House Concurrent Resolution
198:

While CDC remains committed to helping improve prevention, detection,
and treatment of pediatric and adult traumatic brain injury, CDC and
HHS do not have a position on the "National Pediatric Acquired Brain
Injury Plan." CDC encourages additional research be dedicated to
developing evidence for appropriate prevention, diagnosis and treatment
of traumatic brain injury; the current evidence base in this area is
limited and CDC does not believe it is adequate to support a national
plan of this magnitude.

Therefore, NCIPC has no additional comments to offer on the National
Pediatric Acquired Brain Injury Plan. We do recommend that you consult
CDC's most recent TBI report entitled, TBI in the United States:
Emergency Department Visits, Hospitalizations, and Deaths, 2002-2006,
to ensure that the CDC data cited in the document are the most current;
this document can be found at www.cdc.gov/TraumaticBrainInjury. Also
attached to this message is an article further explaining the coding
related to TBI data.

Let me know if you would like to discuss this issue further. Good luck
in your endeavors!

David Guthrie

As you can see, Mr. Guthrie also provided the exact wording the Washington, D.C. office of the CDC sent to your staff (text in BOLD). staff refused to provide us with this information upon requesting it. It is clearly stated in this email to your staff that the "CDC and HHS do not have a position on the 'National Pediatric Acquired Brain Injury Plan.'"

Finally, by changing the wording from encouraging all "...governments to implement the PABI Plan" and instead "elements of the PABI Plan," the measure has no real meaning!

In addition, in the text of the resolution, the cause "blast injury from war" was removed as a cause of an acquired brain injury. To suggest that our young veterans under 25 years of age have not sustained an acquired brain injury due to blast injury is an insult to these young heroes and their families. We cannot imagine what staff person is advising you that these injuries are not brain injuries. Also, the description of the PABI Plan as a "seamless, standardized, evidence-based system of care, universally accessible" was also completely altered without any explanation.

We were told the reason your staff is requiring these changes before moving the measure through the committee is over concern that once this resolution is passed that we would ask the Obama Administration to begin funding the implementation the PABI Plan.

As stated previously, the main purpose of this resolution was and is to create a political consensus around a plan developed and endorsed by the leading experts from across the country dealing with the #1 cause of death and disability for American children and young adults - brain injury. With well over 100 Members of Congress already endorsing the PABI Plan through their co-sponsorship of H. Con. Res. 198, the proposed gutting of this measure is an insult to those Members who have already signed on as a co-sponsor!

While waiting for your staff to move this resolution, The Sarah Jane Brain Foundation has been working with Chairman John Conyers (D-MI) and the House Judiciary Committee as they have done some incredible work in the area of youth sports concussions. Patrick Donohue testified at a Judiciary Committee hearing in Houston in February 2010 and assisted the Committee with organizing their hearing in New York City in May 2010.

U.S. Representative Steven Cohen (D-TN9) said before the May 2010 Judiciary Committee hearing, "Concussions are dangerous and life- threatening. We know that pediatric acquired brain injury is the leading cause of death and disability for children and young adults. It is vital we do more to educate student athletes about and protect them from the dangers of youth sports concussions." Congressman Cohen is a Member of the Judiciary Committee and is a co-sponsor of H. Con. Res. 198.

Also in May 2010, The Sarah Jane Brain Foundation worked with House Education Committee Chairman George Miller (D-CA7) and his staff with their full Committee hearing titled, "The Impact of Concussions on High School Athletes." Dr. Gerard Gioia, the National Lead Director for "mild TBI" Category of Care within the National Pediatric Acquired Brain Injury Plan and Member of the Steering Committee of the International Advisory Board was one of the key witnesses.

Education Committee Member, U.S. Representative Rush Holt (D-NJ12) said before the hearing, "With millions of brain injuries occurring each year to our nation's youth, and many to our youth athletes, the work we are doing today to examine the consequences of concussions on high school athletes is very important to the overall goal of implementing the National Pediatric Acquired Brain Injury Plan (PABI Plan)." Congressman Holt is a Member of the Education Committee and is a co-sponsor of H. Con. Res. 198.

"Addressing Pediatric Acquired Brain Injury (PABI) is an important issue for our nation's health and for ensuring that our students are able to meet their full potential," U.S. Representative Dina Titus (D-NV3) said before the Education Committee hearing which she is a member. "I am pleased that the Education and Labor Committee is holding a hearing to begin to examine the role schools can play in helping to prevent, detect and treat brain injuries in student athletes, and as a co-sponsor of H. Con. Res. 198, I understand the need to support better care for those who suffer from PABI."

"I co-sponsored H. Con. Res. 198 because we must improve treatment for those whose lives are severely impacted by Pediatric Acquired Brain Injuries (PABI)," U.S. Representative Carol Shea-Porter (D-NH1) said before the Education Committee hearing which she is a member. "These injuries have a devastating impact on too many children and young adults. Concussions are a specific form of PABI and, unfortunately, they are quite prevalent in our school sports. I applaud the Committee for this hearing today."

We respectfully request as you hold your first Subcommittee hearing on the topic of pediatric acquired brain injuries that you publicly commit today to allow H. Con. Res. 198 to be moved through the Energy and Commerce Committee immediately upon return from your summer recess and allow all Members of Congress the opportunity to vote on this measure with an up-or-down vote!

Sincerely,
The Steering Committee, The International Advisory Board of The Sarah Jane Brain Foundation
Lori G. Cook, Ph.D., Center for BrainHealth, University of Texas at Dallas
Roberta DePompei, Ph.D., Department of Speech-Language Pathology, University of Akron
Judy Dettmer, Division of Vocational Rehabilitation, Colorado Department of Human Services
Gerard Gioia, Ph.D., Division of Pediatric Neuropsychology, Children's National Medical Center
Christopher Giza, M.D., UCLA Brain Injury Research Center, Mattel Children's Hospital
Ann Glang, Ph.D., Teaching Research Institute, Western Oregon University
Gillian Hotz, Ph.D., Department of Neurological Surgery, University of Miami School of Medicine
Bryan Hudson, Ph.D., Director, Forensic and Clinical Televideo Development, VoCare Telehealth, Inc.; Medical Consultant, International Mind Brain and Health Initiative, Harvard School of Education
Deborah Little, Ph.D., Department of Neurology, University of Illinois at Chicago
Desmond Runyan, M.D., Department of Social Medicine, The University of North Carolina School of Medicine
Ron Savage, Ed.D., North American Brain Injury Society
Joseph Tepas III, M.D., Division of Pediatric Surgery, University of Florida

CC Via Email (staff is copied as well)
The Honorable Kathleen Sebelius, Secretary of Health and Human Services
The Honorable Nancy Pelosi, Speaker of the U.S. House of Representatives
The Honorable Steny Hoyer, Majority Leader of the U.S. House of Representatives
The Honorable John Boehner, Minority Leader of the U.S. House of Representatives
The Honorable Henry Waxman, Chairman of The Committee on Energy and Commerce
The Honorable Diana DeGette, Vice-Chairwoman of The Committee on Energy and Commerce, Chief Deputy Majority Whip
The Honorable George Kenneth "G.K." Butterfield, Sponsor of House Concurrent Resolution 198, Chief Deputy Majority Whip, Secretary of Congressional Black Caucus, Member of The Committee on Energy and Commerce
The Honorable Joe Barton, Ranking Minority Member of The Committee on Energy and Commerce
The Honorable Ralph Hall, Ranking Minority Member of The U.S. House Energy and Commerce Subcommittee on Health
The Honorable Thomas R. Frieden, M.D., M.P.H., Director, Centers for Disease Control and Prevention (CDC)
Ileana Arias, Ph.D., Principal Deputy Director, Centers for Disease Control and Prevention
Donald E. Shriber, M.P.H., Director, CDC Washington Office
Edward L. Hunter, Associate Director, CDC Washington Office
Andrew S. Rein, Associated Director for Policy
Robin M. Ikeda, M.D., M.P.H., Acting Director, National Center for Injury Prevention and Control [NCIPC], CDC
Edwin Trevathan, M.D., M.P.H., Director, National Center on Birth Defects and Developmental Disabilities [NCBDDD], CDC
Linda Degutis, Ph.D., MSN, Incoming Director, National Center for Injury Prevention and Control [NCIPC], CDC, Yale Center for Public Health Preparedness, Yale School of Public Health
Tochukwu Igbo, Esq., Division of Public Health Policy and Practice, CDC
Jessica Gershick, MS, CHES, Office of Health and Safety, CDC
Jennifer Greaser, Public Health Analyst, CDC
Marlena M. Wald, M.P.H., M.L.S., Epidemiologist, Division of Injury Response, NCIPC, CDC
David Guthrie, Associate Director for Policy and Partnerships, Division of Injury Response, NCIPC, CDC

#####

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org
www.thebrainproject.org

Sarah Jane’s Dad Asks President Obama & Speaker Pelosi

2010-09-22T21:40:00.008-04:00

For Immediate Release Contact: Jennipher Dickens

September 22, 2010 (212) 576-1180 or jennipher@thebrainproject.org

NEW YORK, NY – Flanked by children with brain injuries and their families outside the Democratic Congressional Campaign Committee (DCCC) and Democratic Senate Campaign Committee (DSCC) fund-raiser, the father of Sarah Jane Donohue (the namesake of the Sarah Jane Brain Foundation) asked President Barack Obama and Speaker Nancy Pelosi to become a “Voice For My Child” by allowing an up-or-down vote on the most broad-based, bi-partisan healthcare initiative during the entire Congress: H. Con. Res. 198. Currently over 110 Members of Congress have signed on as co-sponsors of this measure, yet Congressman Frank Pallone (D-NJ6) refuses to allow an up-or-down vote and will not explain his reasoning.

“I am asking President Obama and Speaker Pelosi to stop one Democratic Member of Congress, Congressman Frank Pallone (D-NJ6), from holding up the most broad-based, bi-partisan healthcare initiative the entire Congress,” said Patrick Donohue, father of Sarah Jane Donohue and founder of The Sarah Jane Brain Foundation. “I am asking President Obama and Speaker Pelosi to join this bi-partisan effort and become a Voice For My Child and the millions of children just like her by endorsing the National Pediatric Acquired Brain Injury Plan.”

“Every 40 SECONDS an American child or young adult enter an emergency department suffering from a brain injury. The National Pediatric Acquired Brain Injury Plan is the most comprehensive, collaborative plan to prevent, identify and treat the #1 leading cause of death and disability for American youth, which is brain injury,” continued Patrick Donohue. “Every 9 ½ MINUTES an American is infected with HIV. The federal government invests more than $3 Billion annually towards HIV/AIDS research but less than $100 Million annually towards pediatric acquired brain injury research. Why can’t our government support both?”

On July 13, 2010, the White House released its National HIV/AIDS Strategy with three primary goals:

1. Reducing the number of people who become infected with HIV;

2. Increasing access to care and optimizing health outcomes for people living with HIV; and,

3. Reducing HIV-related health disparities.

On July 26, 2010 (the 20th Anniversary of The Americans with Disabilities Act), Sarah Jane Donohue delivered a letter to President Obama at the White House asking for him to convene a White House Summit to begin implementing the National Pediatric Acquired Brain Injury Plan (PABI Plan). Over 110 Members of Congress have already endorsed the PABI Plan by co-sponsoring H. Con. Res. 198. The PABI Plan develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of PABI families regardless of where they live in the nation.

For a complete summary of H. Con. Res. 198 please read the recent letter to Congressman Frank Pallone from the Steering Committee of the International Advisory Board of the Sarah Jane Brain Foundation: www.TheBrainProject.org/lettertopallone.php.

To read the entire National Pediatric Acquired Brain Injury Plan or to learn more information about The Sarah Jane Brain Foundation, please visit: www.TheBrainProject.org

The more I think about Congressman Frank Pallone (D-NJ6), holding up the most broad-based, bi-partisan healthcare initiative the entire Congress,” the more I realize as a survivor of TBI - Voice, I feel that not only is it an insult to those Members of Congress who have already signed on as a co-sponsor, This is also very much of an insult to me and every, brain, injury, survivor, veteran, children, young adult, in the nation!

PABI is the leading cause of death and disability for children and young adults from birth through 25 years of age in the United States. Over 5, 000 deaths occur annually due to PTBI, over 17, 000 annually suffer from permanent disability due to PABI, and over 1, 000, 000 are hospitalized each year due to PABI. In addition, since most brains aren't fully developed until age 25, many of the Military Veterans returning from Iraq and Afghanistan with TBI are actually considered PABI. Pediatric Acquired Brain Injuries (PABI) include all traumatic causes plus brain injuries caused by brain tumors, strokes, meningitis, insufficient oxygen, poisoning, ischemia and substance abuse.

I can honestly say for myself, I wish on that July afternoon 22 years ago, that there was a national PABI plan in place. I wish that the States, 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.

Sincerely, Craig Sears

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org

The Sarah Jane Brain Foundation Presents A Panel Discussion on The National Pediatric Acquired Brain Injury Plan

2010-09-01T18:08:00.006-04:00

Pediatric Acquired Brain Injury (PABI) is the #1 cause of death and disability in children/young adults in
the United States

The Sarah Jane Brain Foundation
Presents

A Panel Discussion on The National Pediatric Acquired Brain Injury Plan

Monday, September 20, 2010 from 3:30pm-5:30pm

The Mount Sinai School of Medicine
1425 Madison Avenue (between 98th and 99th Street)
Goldwurm Auditorium, 1st floor New York, NY 10029Experts Participating on the Panel Include

Welcoming Remarks and Moderator: Kristjan T. Ragnarsson, M.D., Dr. Lucy G. Moses Professor and Chair of Rehabilitation Medicine, Mount Sinai School of Medicine

Prevention Category of Care: Barbara Barlow, M.D., Founder and Executive Director, Injury Free Coalition for Kids, Columbia University Mailman School of Public Health

Acute Category of Care: Steven Weinstein, M.D., Director, Pediatric Epilepsy, Weill Cornell Medical College

Reintegration Category of Care: Rene Carfi, Director of Community and Information Services, Brain Injury Association of New Jersey

Adult Transition Category of Care: Brian D. Greenwald, M.D., Assistant Professor, Rehabilitation and Physical Medicine, Mount Sinai School of Medicine

“Mild” TBI Category of Care: Wayne Gordon, Ph.D., Jack Nash Professor, Department of Rehabilitation Medicine, Mount Sinai School of Medicine

Rural/Tele-health Category of Care: Jennipher Dickens, Communications Director, The Sarah Jane Brain Foundation, mother of a 4-year-old PABI survivor

The Virtual Center Category of Care: Edwin Simpser, M.D., Chief Medical Officer and Executive Vice President, St. Mary’s Healthcare System for Children

National Legal Advocacy: Patrick B. Donohue, Esq., Founder, The Sarah Jane Brain Foundation

WITH SPECIAL GUEST
BRYAN STEINHAUER
Binghamton University graduate who was viciously beaten into a two-month coma in May 2008, by Serbia-born college basketball player Miladin Kovacevic; Bryan is a leading voice for brain injury advocacy

Please join the SJBF for a Meet and Greet the Experts Reception
5:30pm-7:00pm (immediately following panel presentation)

Meet and Greet Reception: FREE (there will be no charge for those who attend the panel presentation)

Reception Sponsorship Levels – Donor: $100 pp; Sponsor: $250 pp; Underwriter: $1,000 pp

Host Committee Levels – Platinum: $50,000; Gold: $25,000; Silver: $10,000 (includes sit-down dinner at 7:30 p.m.)For questions regarding the panel, tickets, or sponsorship packages, please contact Jen Glaser at jen@thebrainproject.org
or (212) 576-1180

Meet and Greet the Experts Reception Committee

Barbara Barlow, MD, Founder and Executive Director, Injury Free Coalition for Kids, Columbia University Mailman School of Public Health

Joshua B. Bederson, MD, Chair, Neurosurgery, Mount Sinai School of Medicine

Alex Bekker, MD, PhD, Professor of Anesthesiology and Neurosurgery, Vice-Chair for Research, Department of Anesthesiology, CEO, Foundation for Perioperative Research & Education, New York University Medical Center

Rene Carfi, Director of Community and Information Services, Brain Injury Association of New Jersey

Jennipher Dickens, Communications Director, The Sarah Jane Brain Foundation, mother Christopher (4-year-old PABI survivor)

Patrick B. Donohue, Esq., Founder, The Sarah Jane Brain Foundation, father Sarah Jane (5-year-old PABI survivor)

Isabelle M. Germano, MD, Professor, Neurosurgery, Mount Sinai School of Medicine
Darryl Gibbs, Founder, Cynthia Gibbs Foundation, father of Cynthia Gibbs (8 months old when she was killed due to PABI)

Wayne Gordon, Ph.D., Jack Nash Professor, Department of Rehabilitation Medicine, Mount Sinai School of Medicine

Mark W. Green MD, Professor of Neurology and Anesthesiology, Director of Headache and Pain Medicine, Mount Sinai School of Medicine

Brian D. Greenwald, M.D., Assistant Professor, Rehabilitation and Physical Medicine, Mount Sinai School of Medicine

Roger Hartl, MD, Associate Professor of Neurological Surgery, Weill Cornell Medical College, Associate Neurological Surgeon, NewYork-Presbyterian Hospital, Leonard and Fleur Harlan Clinical Scholar Weill Cornell Medical College, Team Neurosurgeon, New York Giants

Professor Yasmin Hurd, Ph.D, Departments of Psychiatry, Pharmacology & Systems Therapeutics, and Neuroscience, Director of the MD/PhD Program, Mount Sinai School of Medicine

Andy Jagoda, MD, Professor and Chair of Emergency Medicine, Mount Sinai School of Medicine, EMS Medical Director, Brain Trauma Foundation

Danielle Laraque, MD, Professor of Pediatrics and Preventive Medicine, Debra and Leon Black Professor of Pediatrics, Chief, Division of General Pediatrics

Julie Peters, Executive Director, Brain Injury Association of Connecticut

Silvana Riggio M.D., Professor of Psychiatry and Neurology, Medical Director of the NFL Neurological Care Program, Mount Sinai School of Medicine

Kristjan T. Ragnarsson, M.D., Dr. Lucy G. Moses Professor and Chair of Rehabilitation Medicine, Mount Sinai School of Medicine

Nikolaos K. Robakis, Ph.D., Professor of Neuroscience and First A.P. Slaner Professor for Alzheimer disease research, Mount Sinai School of Medicine

Frankki Romano, Founder, Sarah Jane Brain Club, Jericho High School, sister of John (19-year-old PABI survivor)

Roxann Romano, mother of John (19-year-old PABI survivor)

Craig Sears, adult PABI survivor

Edwin Simpser, M.D., Chief Medical Officer and Executive Vice President, St. Mary’s Healthcare System for Children

Bryan Steinhauer, adult PABI survivor

Steven Weinstein, M.D., Director, Pediatric Epilepsy, Weill Cornell Medical College

Daniel Winchester, Ph.D., Specialist in rehabilitation with focus on Developmental Psychology

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org
www.thebrainproject.org

Congressman Jim Himes Connecticut-4 about the Corrupt State Legal System

2010-08-10T10:18:00.011-04:00

Hi! Congressman Himes,
My name is Craig Sears I am a survivor of Traumatic Brain Injury on the ABI Medicaid Waiver, in the past you have helped me when the Department of Social Services broke the laws that guarantee my rights under the ABI Medicaid Waiver which resulted in my program being taken away for no reason without cause. I want to thank you for what your office did to help me get my program back. I know for sure that this is happening to others, I would like you to ensure that this does not continue to happen.

I am threatened by the state of Connecticut Department of Social Services ability to disregard the very laws that were implemented to protect individuals like myself who have a Traumatic Brain Injury. I am concerned about how Medicare funds are being distributed in each state through the ABI Medicaid program. There are 25 states that have ABI Waiver support. By the state of Connecticut allowing DSS to break the laws of the ABI Medicaid Waiver it is leading the way for the other 24 states to discriminate against and take advantage of someone like me -

You should have received official documents that reference specific case laws that were violated; these documents show the official documentation from my Fair Hearing Statement that was developed by the Office Of Protection And Advocacy For Persons With Disabilities .I have submitted these documents and more to the Commission on Human Rights and Opportunities on several occasions and your office in Bridgeport CT to no avail.

I have also contacted State Representative Peggy Reeves who has contacted Your Office in Bridgeport CT and the Office of Protection and Advocacy for Persons with Disabilities. These parties have indicated to me that they believe that the Department of Social Services has in fact been in violation of laws that were enacted to protect citizens like myself based on the facts that were presented to them.

The question at hand now is why is my case not being heard/ addressed properly?

Why is everybody passing the buck? Medicare and The State of Connecticut and the ABI Medicaid Waiver laws are not being enforced. Please give this situation your fullest attention as your influence will impact the thousands of survivors living with Traumatic Brain on the ABI Medicaid Waiver.

Sincerely Craig Sears

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

This goes to show how corrupt the state of Connecticut legal system is

2010-07-29T16:26:00.005-04:00

JUSTICE SYSTEM FAILS Connecticut State Law 7/28/10 Commission on Human Rights and Opportunities Southwest Region Office 350 Fairfield Avenue 6th Floor Bridgeport CT 06604

see my older posts blog fact: State of Connecticut Department of Social Services discriminating against and taking advantage of Brain Injury Survivors on the ABI Medicaid waiver

JUSTICE SYSTEM FAILS Connecticut State Law

2010-07-24T12:02:00.011-04:00

What if someone close to you had a Traumatic Brain Injury?

Connecticut Commission on Human Rights and Opportunities

allows DSS to discriminate and break

CT State Law

JUSTICE SYSTEM FAILS

CHRO Case NO. Craig Sears v. State of CT. – DSS

Department of Social Services Neglects People with Disabilities failing

Acquired Brain Injury Medicaid Waiver Laws

May 21, 2010

Craig Sears Cert:

Re: State of Connecticut Commission On Human Rights And Opportunities
Southwest Region Office
350 Fairfield Avenue 6th Floor
Bridgeport, Ct. 06604

Re: Merit Assessment Review Reconsideration Request
Case Name: Sears v. State of CT. – DSS
CHRO Case NO.:
EEOC Case No.: N/A

In an effort to advocate for myself and all those individuals who are protected by the established legislation which is found within the Acquired Brain Injury (ABI Medicaid Waiver) Program I am applying for “Reconsideration” of the State of Connecticut’s Commission On Human Rights And Opportunities decision to dismiss my complaint which was based on “ No Reasonable Possibility”. In doing so I will be advocating further for both acknowledgement of and retribution for those laws which have been violated that are stated within the Fair Hearing Statement for Craig Sears which was prepared by xxx , Human Services Advocate 10/6/09 from the State of Connecticut Office of Protection and Advocacy for Persons with Disabilities.( Please refer to the enclosed documentation of this Fair Hearing Statement which is being resubmitted for the second time).

In compliance with your rules and regulations I am requesting as provided in CONN.GEN.STAT. 46a-83(e) in writing within 15 calendar days “Reconsideration” under the specific grounds mentioned below (please refer to the specifics of my case: Case Name: Sears v. State of Ct.-DSS, CHRO Case No.: 1020198, EEOC Case No.: N/A)

1) An error or fact or law should be corrected.
Some of the oversights that I am referring to are mentioned below but are not limited to those listed. For additional oversights please refer to the initial documentation which was submitted consisting of over 500 pgs of pertinent information.

a. While the State of Connecticut Commission on Human Rights and Opportunities has established “No Reasonable” possibility under Merit Assessment Standard 4 by establishing in their minds that no allegations of discrimination could be substantiated with Quality Living Management Solutions Service Provider LLC (QLMS) the initial complaint that I submitted was intended to be directed at the Department of Social Services because it is ultimately the responsibility of the Department of Social Services to enforce the laws of the ABI Medicaid Waiver which are clearly demonstrated in the Fair Hearing Statement that was developed by the State of Connecticut Office Of Protection And Advocacy For Persons With Disabilities by xxx 10/06/09. I believe your response was directed at the specific service provider (QLMS) at the time which was in my mind a clear error in fact and law which should be corrected.

b. In response to your findings please review the literature that documents the time line of the events which should reveal that I dismissed the team of caregivers that Quality Living Management Solutions Service Provider LLC was providing prior to the allegation of my misconduct.

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

d. It should be known that I identified new service providers which were in place to provide services in an effort to maintain complete continuity in care as dictated by the ABI Medicaid Waiver and the Department of Social Services failed to effectively authorize payment to facilitate a smooth transition to a new provider to maintain proper care for my health and wellness.(again refer to the Fair Hearing Request 10/6/09) Please also refer to the e-mails that I am resubmitting which document and substantiate my complaint of the Department of Social Services failure to implement services in a timely manner so as to uphold the laws of the ABI Medicaid Waiver.

e. It is my belief which is based on conversations with the office of Protection and Advocacy for Persons with Disabilities (xxx) that this institution was not contacted to substantiate my allegations nor were they conferred with in any way by CHRO to seek out the TRUTH of this matter; further more it was this agency that directed me how to proceed to have my Civil Rights protected and I quote, “ In addition to the legal resources I gave you, you should consider filing a discrimination complaint with the Commission on Human Rights and Opportunities(CHRO).” I am following this suggestion and I am resubmitting my request for “RECONSIDERATION”.

2) New Evidence has been discovered which materially affects the merits of the case and which, for good reasons, was not presented during the investigation.

a. Please refer to pg.4 of the Merit Assessment Review where it states “That there was a brief breach in the continuity of those services” This statement refers to the time period between August 29, 2009 and at least October 6, 2009 where I was without services which is stated in the Fair Hearing Statement. This substantiates that I was left without services which is in violation of the ABI Waiver (refer to Fair Hearing Statement)

b. By CHRO dismissing my case CHRO is not upholding the very laws that they have implemented to protect and serve this specific population that requires specialized care due to the nature of the resulting impairments that may occur at different times under various environmental conditions.

3) Other good cause for reconsideration has been shown.

a. In addition to the enclosed documents please consider the following information which supports my credibility as an advocate for this population.

I. I was a member of the class action law suit in the 1990’s that worked to implement the Acquired Brain Injury Medicaid Waiver in the state of Connecticut ( the very program that has been put in place to protect my needs which is now failing to be instituted by the Department of Social Services)

II. I have been an integral public figure in the quest for services for this population over the years which links my life experience and face with this issue (posters, television shows, radio, public appearances, work books, state banners, etc.).

III. I have served as a board member on the Connecticut TBI Advisory Board Committee for the past five years.

IV. I now serve on the Sarah Jane Brain Foundation International Family Advisory Board Committee for the Pediatric Acquired Brain Injury (PABI Plan) for the past year and a half.

V. ETC.( http://www.google.com/profiles/craig.sears.tbi)
In closing the retribution that I am seeking is listed in my initial complaint.

A copy was mailed to Attorney Daniel T. Butler
State of CT –DSS
25 Sigourney Street
Hartford CT 06106-5033
Cert #
Sincerely,

Craig Sears

Request for reconsideration was REJECTED 7/7/10

by Kimberly Jacobsen, Human Rights Attorney ADOPTED by Charles Krich,111 Principal Attorney Delegate for Executive Directive

State of Connecticut Commission On Human Rights And Opportunities Robert Brothers Jr Executive Directive 21 Grand St Hartford, CT 06106

see my blog for the fact: State of Connecticut Department of Social Services discriminating against and taking advantage of Brain Injury Survivors on the ABI Medicaid waiver

Which Helmet for Which Activity?

2010-07-23T16:23:00.003-04:00

Why are helmets so important?
For many recreational activities, wearing a helmet can reduce the risk of a serious head injury and even save your life.

How can a helmet protect my head?
During a fall or collision, most of the impact energy is absorbed by the helmet, rather than your head and brain.

Are all helmets the same?
No. There are different helmets for different activities. Each type of helmet is made to protect your head from the impacts common to a particular activity or sport. Be sure to wear a helmet that is appropriate for the particular activity you’re involved in. (See the table in this pamphlet for guidance). Other helmets may not protect your head as effectively.
How can I tell which helmet is the right one to use?

Bicycle and motorcycle helmets must comply with mandatory federal safety standards. Many other recreational helmets are subject to voluntary safety standards.
Helmets certified to a safety standard are designed and tested to protect the user from serious head injury while wearing the helmet. For example, all bicycle helmets manufactured after 1999 must meet the U.S. Consumer Product Safety Commission (CPSC) bicycle helmet standard. Helmets meeting this standard provide

protection when the helmet is used properly. The standard requires that chin straps be strong enough to keep the helmet on the head and in the proper position during a fall or collision.

Helmets specifically marketed for exclusive use in an activity other than bicycling (for example, go-karting, horseback riding, lacrosse, and skiing) do not have to meet the requirements of the CPSC bicycle helmet standard. However, these helmets should meet other federal and/or voluntary safety standards.

Don’t rely on the helmet’s name or claims made on the packaging (unless the packaging specifies compliance with an appropriate standard) to determine if the helmet meets the appropriate requirements for your activity. Most helmets that meet a particular standard will contain a special label that indicates compliance (usually found on the liner inside of the helmet). See the table in this pamphlet for more information on what to look for.

Are there helmets that I can wear for more than one activity?
Yes, but only a few. You can wear a CPSC-compliant bicycle helmet while bicycling, recreational roller or in-line skating, and riding a non-powered scooter. Look at the table in this pamphlet for other activities that may share a common helmet.

Are there any activities for which one shouldn’t wear a helmet?
Yes. Make sure your child takes off his/her helmet before playing on playgrounds or climbing trees. If a child wears a helmet during these activities, the helmet’s chin strap can get caught on the equipment or tree and pose a risk of strangulation. The helmet itself may present an entrapment hazard.

How can I tell if my helmet fits properly?
A helmet should be both comfortable and snug. Be sure that it is level on your head—not tilted back on the top of the head or pulled too low over your forehead. It should not move in any direction, back-to-front or side-to-side. The chin strap should be securely buckled so that the helmet doesn’t move or fall off during a fall or collision.

If you buy a helmet for a child, bring the child with you so that the helmet can be tested for a good fit. Carefully examine the helmet and accompanying instructions and safety literature.

What can I do if I have trouble fitting the helmet?
You may have to apply the foam padding that comes with the helmet and/or adjust the straps. If this doesn’t work, consult with the store where you bought the helmet or with the helmet manufacturer. Don’t wear a helmet that doesn’t fit correctly.

Will I need to replace a helmet after an impact?
That depends on the severity of the impact and whether the helmet can withstand one impact (a single-impact helmet) or more than one impact (a multiple-impact helmet). For example, bicycle helmets are designed to protect against a single severe impact, such as a bicyclist’s fall onto the pavement. The foam material in the helmet will crush to absorb the impact energy during a fall or collision and can’t protect you again from an additional impact. Even if there are no visible signs of damage to the helmet, you must replace it.

Other helmets are designed to protect against multiple moderate impacts. Two examples are football and ice hockey helmets. These helmets are designed to withstand multiple impacts of the type associated with the respective activities. However, you may still have to replace the helmet after one severe impact, or if it has visible signs of damage, such as a cracked shell or permanent dent in the shell or liner. Consult the manufacturer’s instructions for guidance on when the helmet should be replaced.

Activity Helmet Type Applicable Standard(s)
Individual Activities — Wheeled
Bicycling (including low speed, motor assisted)
Roller & In-line Skating — Recreational
Scooter Riding (including low speed, motor assisted) Bicycle CPSC, ASTM F1447, Snell B-90/95, Snell N-94†
BMX Cycling BMX CPSC, ASTM F2032
Downhill Mountain Bike Racing Downhill CPSC, ASTM F1952
Roller & In-line Skating — Aggressive/Trick
Skateboarding Skateboard ASTM F1492†, Snell N-94†
Individual Activities — Wheeled Large Motor
ATV Riding
Dirt- & Mini-Bike Riding
Motocrossing Motocross or Motorcycle DOT FMVSS 218, Snell M-2005
Karting/Go-Karting Karting or Motorcycle DOT FMVSS 218, Snell K-98, Snell M-2005
Moped Riding
Powered Scooter Riding Moped or Motorcycle DOT FMVSS 218, Snell L-98, Snell M-2005
Individual Activities — Non-Wheeled
Horseback Riding Equestrian ASTM F1163, Snell E-2001
Rock- & Wall-Climbing Mountaineering EN 12492†, Snell N-94†
Team Sport Activities ‡
Baseball, Softball & T-Ball Baseball Batter’s NOCSAE ND022
Baseball Catcher’s NOCSAE ND024
Football Football NOCSAE ND002, ASTM F717
Ice Hockey Hockey NOCSAE ND030, ASTM F1045
Lacrosse Lacrosse NOCSAE ND041
Winter Activities
Skiing
Snowboarding Ski ASTM F2040, CEN 1077, Snell RS-98 or S-98
Snowmobiling Snowmobile DOT FMVSS 218, Snell M-2000
Although a helmet has not yet been designed for the following two activities, until such helmets exist, wearing one of the three listed types of helmets may be preferable to wearing no helmet at all.
Ice Skating
Sledding

Bicycle CPSC, ASTM F1447, Snell B-90/95 or N-94†
Skateboard ASTM F1492†, Snell N-94†
Ski ASTM F2040, CEN 1077, Snell RS-98 or S-98

Where can I find specific information about which helmet to use?
Look at the information in columns -of the table up above and follow these easy steps:
Find the activity of interest in the first column
().Read across the row to find the appropriate helmet type for that activity listed in the second column ().
Once you’ve found the right helmet, look for a label or other marking stating that it complies with an applicable standard listed in the third column ().

For more information, please contact the
U.S. Consumer Product Safety Commission (CPSC) at www.cpsc.gov or (800) 638-2772

Traumatic Brain Injury (TBI) Awareness: DISABILITY RESOURCE CENTER/C Sears TBI 80 Ferry Boulevard Suite 210 Stratford, CT, 06615

2010-07-15T21:30:00.006-04:00

Sunday August 1, 2010 between the hours of 10a.m.-3 p.m. at the Stop & Shop located at 5 River Road, Wilton, Ct. 06897

My mission for this day is to raise awareness in the public regarding Traumatic Brain Injuries TBI Brain injuries last forever. In fact, they only cure is prevention. “Those with TBI need their voices heard.” My goal is to 1 prevent further tragedies from happening, 2 increase the resource base for those that are presently living with a traumatic brain injury 3 raise funds to apply towards various projects that will benefit both prevention efforts and supportive services

My name is Craig Sears and I am a survivor of Traumatic Brain Injury (TBI)
Over 20 years ago I experienced my life change in the blink of an eye. I was in a motor vehicle accident and sustained a TBI I lost everything. I found myself alone and getting into trouble ending up in shelters local lockups and numerous mental health facilities all over the state. There was no help for TBI Survivor’s I continued to spiral down and soon I wound up homeless, and then in prison.

My advocacy started as a means to overcome my own difficulties. It has become my mission to ensure that no one experience what I had. In the 1990s I became a spokesman for Connecticut Brain Injury Association. I advocated for Connecticut's Acquired Brain Injury Medicaid Waiver implemented in 1999. This waiver allows the state to permit organizations to provide non-medical services to people with TBI enabling them to live in the community outside of nursing homes and institutions

I have since become a national voice for TBI survivors working with advocacy groups such as Goodwill the Brain Injury Association and the New Haven Vet Center.

In 2009 I teamed up with The Sarah Jane Brain Project to help promote the need for a national Pediatric Acquired Brain Injury (PABI) medical plan. The Sarah Jane Brain Project is named for Sarah Jane Donohue a 5 year old New York girl who was shaken by her baby nurse when she was 5 days old. Her father Patrick Donohue spearheads a national effort to standardize the way brain injuries are treated for children. I've been proud to stand up with Patrick in Washington, D.C. and other cities across the country to raise awareness on this issue. Sarah Jane's story and my own are just 2 of thousands. The current health care system is failing many who suffer from brain injury regardless of the cause. And the consequences can be life long and costly.

PABI is a brain injury to anyone under the age of 25 which is when the brain fully matures. PABI includes all brain injuries caused by trauma from falls motor vehicle accidents violence/assault sports gunshot wounds and bicycle accidents. PABI is the leading cause of death and disability for children under 15 years of age in the United States. Over 5,000 deaths occur annually due to PABI over 17,000 children annually suffer from permanent disability due to PABI and over 1,000,000 children are hospitalized each year due to PABI. In addition since most children's brains aren't considered developed until age 25 many of the Military Veterans returning from Iraq and Afghanistan with TBI are actually considered PABI.

The money raised sponsors TBI awareness. Also helps to Supply paper stamps copies and other office items TBI support group meetings Media and other advertising And much more

Making a donation by check please make the check payable to:
DISABILITY RESOURCE CENTER/C Sears (TBI)

mail it to> Disability Resource Center of Fairfield County/C Sears TBI 80 Ferry Boulevard Suite 210 Stratford Connecticut 06615

(DRC) is a 501c3 non-profit organization all Donations are tax-deductible

Thank you in advance for your contribution!

Craig Sears A Voice for Traumatic Brain Injury
http://www.myspace.com/searscraig

Brain injuries last forever. In fact, they only cure is prevention.

2010-07-12T16:33:00.003-04:00

Often, the kinds of events that lead to brain injury-including car accidents, falls, and acts of violence-are simply beyond our control. But frequently, the brain injuries are not.

In fact, brain injuries can often be avoided, and what follows are some of the crucial, yet simple, measures we can all take every day to avoid such unnecessary heartbreak.

Always wear your seatbelt.

Using seatbelts is the single most effective means of reducing both fatal and non-fatal injuries in motor vehicle accidents.

Never drive under the influence of alcohol or drugs-and never get into a vehicle with a driver who is.

Even a small amount of alcohol or drugs will impair one’s ability to drive safely and respond effectively.

Always make certain that children are properly restrained in a back seat when traveling in a car.

Connecticut law requires that infants be restrained in a rear-facing car seat until they are one year of age and weigh 20 pounds and that toddlers and young children continue to use appropriate restraints seats until they are at least six years old and weigh 60 pounds. ( those who outgrow their car seats must use booster seats with lap and shoulder belts.) Children under 12 should always ride in the back seat.

Bicycle helmets have been shown to reduce the risk of brain injury by as much as 88%.

Always wear a helmet when riding a bike.

Connecticut law requires that all children under the age of 16 wear a helmet when riding a bicycle. However, adults need helmets, too! Bicyclists hospitalized with head injuries are 20 times more likely to die than those without head injuries.

Helmets should be worn for other activities as well- including the following.

· Riding motor-cycles, snowmobiles, and all-terrain vehicles.

· Contact sports, such as football, hockey, or boxing

· Using in – line skate or riding a skateboard.

· Batting and running the bases in baseball and softball.

· Horseback riding.

· Skiing and snowboarding.

Avoid falls in the home by taking certain specific precautions.

· Install and use handrails on stairways

· Install window guards to prevent young children from falling out of open windows.

· Use safety gates at the top of and bottom of stairs when young children are around.

· Remove tripping hazards, such as small area rugs and loose electrical cords.

· Use non-slip mats in the bathtub and on shower floors.

Avoid street accidents by teaching children pedestrian safety.

While no children under the age of ten should ever be allowed to cross the street alone, it’s important to teach all children the following rules.

· Always cross at corners and crosswalks.

· Always stop at the curb before crossing.

· Always look left and right-then left again-before crossing.

· Walk- don’t run-when crossing.

· When crossing the street in front of a school bus, stay at least ten feet in front of the bus.

Always keep children safe in other ways, too.

· Never shake a baby.

· And always store all firearms-including BB and pellet guns-unloaded, locked up, and out of reach using a gun lock box or a gun safe. Be sure to keep all keys and lock combinations hidden in a separate location

Employment Options LLC 91 Willenbrock Road Oxford CT 06478 defamed my character

2010-06-22T22:15:00.013-04:00

This is an email from my ABI Waiver Provider Doctor about the accusations made by EO. (Out of respect of the doctor’s wishes I am only posting his first name.)

Hi Craig

You are correct. Shannon denies every accusation made by EO. Wow!

Dr, Tariq, PhD., M.S., MBA

This is a letter from my ABI Waiver Provider Doctor about the accusations made by EO

NeuroStrategies, Inc.
Dr, Tariq, PhD., M.S., MBA
neurostrategies@earthlink.net

RE: Shannon and Employment Options LLC

Attention: Craig Sears

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

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

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

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

Respectfully,
Dr, Tariq, PhD., M.S., MB

To: State of Connecticut, Commission on Human Rights & Opportunities
Rowland State Government Center
55 West Main Street, Suite 210
Waterbury, CT 06702-2004

And

Quality Assurance Manager
Allied Community Resources
Ph: 860 627-9500 ext 126
Fax 860 627-0230
　
From Craig Sears

1. The respondent is Employment Options whose business address is 91 Willenbrock Road, Oxford, CT 06478

2. I am a person with a physical disability, specifically my condition is known as traumatic brain injury (TBI) in and around October 2009 until in or around April 2010, the respondent refused to provide me services including supportive employment services and independent living skills training services.

3. Respondent reported to the Dept. of Social Services that they were providing me services, but I did not receive the services respondent had committed to provide me and for which they were compensated for providing me through a program known as the ABI Medicaid Waiver allied community resources program. Respondent sent unqualified individuals such as xxx to provide me independent living skills traing for which he was not qualified because he lacked the appropriate certification.

4. Respondent sent me support employment staff and advised them not to provide me any supported employment services. Please refer to letter written by xxx on 1/4/10... This made it appear as if they were providing me services when in fact they were not providing me services to assist me in my work as an advocate.

5. I made complaints with the Department of social services and protection and advocacy and Dr, Tariq, PhD., M.S., MBA Regarding employment options unethical and illegal treatment of me. Please refer to letter written by Dr, Tariq, PhD., M.S., MBA and, Jessica from P&A ABI Waiver Provider Complaint Meeting

6. When I complained about the fact services were not being provided respondent unreasonable confrontational and defamed my character by stating they had concerns for me working with female staff and implying I had acted inappropriately with female staff. Please refer to letter written by Dr, Tariq, PhD., M.S., MBA and, Jessica from P&A ABI Waiver Provider Complaint Meeting

7. Respondent replaced the female staff person with another female. Please refer to letter written by, Jessica from P&A ABI Waiver Provider Complaint Meeting

8. And I quote: Hi Craig

You are correct. Shannon denies every accusation made by EO. Wow!

Dr, Tariq, PhD., M.S., MBA

9. You can also Please refer to State of Connecticut Department of Social Services Acquired Brain Injury (ABI) Invoice And Time Sheets in the copies allied community resources sent to me Date 5/7 & 1/15 & 1/29 & 2/12 & 2/26 etc! There are all billing for xxx providing me supported employment services that I did not receive Please refer to letter written by xxx along with the fact that xxx stopped working for Employment Options LLC 91 Willenbrock Road, Oxford, CT 06478

10. My acquired brain injury ABI program is based on assessment of my condition and I never have had any issues with women. Please refer to letter written by Dr, Tariq, PhD., M.S., MBA Date and, Jessica from P&A ABI Waiver Provider Complaint Meeting

11. Respondent stated they didn't agree with my views on reforming the ways persons with TBI are treated and served and that was the reason they were refusing to provide me services to complete my advocacy work. You have my permission to speak with Dr, Tariq, PhD., M.S., MBA and Jessica from P&A

12. Respondent discriminating against me on the basis of my physical disability traumatic brain injury in failing to provide me with equal services in comparison to others they provide such services.

13. I am requesting that Employment Options LLC 91 Willenbrock Road, Oxford, CT 06478 be removed as a allied community resources ABI Medicaid Waiver Provider I am also requesting a complete investigation into my case and every ABI TBI survivors case they are providing services for as a approved allied community resources ABI Medicaid Waiver Provider

Sincerely Craig Sears

See below for all updates

Good afternoon Craig,
Attached are my meeting minutes from today's meeting about
Employment Options. Please let me know if you have any questions, or
Find anything to be inaccurate to your recollection.
Thank you,
Jessica

Jessica
Human Services Advocate PAIMI/PATBI
Office of Protection and Advocacy for Persons with Disabilities
60 B Weston Street
Hartford, CT 06120
1.800.842.7303 (V and TDD)
TDD 860.297.4380
Fax 860-566-8714

ABI Waiver Provider Complaint Meeting

Present: Craig Sears, Jessica from P&A, Cindy Perjon from DSS, Jim Dwyer from DSS, Erick from DSS, and Jose from Independent Living Solutions.

• Craig stated that he requested the meeting to make a formal complaint about Employment Options.
• Craig presented a copy of a written letter by his former ILST, for Cindy’s and Jim’s review.

• Craig’s primary complaints were;

1) Staff working with Craig was instructed by Employment Options management to refrain from providing him any services “pertaining to his state ABI waiver case”. Please refer to letter written by Jessica from P&A. Craig stated that he did not receive the services outlined in his waiver plan that Employment Options committed to provide, and reported providing.

2) Female staff was removed from his case without cause. Employment Options expressed concerns about Craig working with female staff, cited this as the reason for removing his current staff, however, they replaced her with another female. Craig emphasized that he prefers working with females and has never had any issues working with females. This statement was supported by Craig’s cognitive behaviorist, Dr Tariq Abdulaziz, PhD., M.S., MBA and Jessica, his advocate from P&A, at his team meeting.

• Cindy stated that she will investigate the complaint. She stated that Craig may not be informed of actions DSS may take with the provider.

• Craig was reminded of his options to address the complaint with CHRO, Statewide Legal Services, or a private attorney.

After the meeting I asked questions in an effort to advocate for myself and all those individuals who are protected by the established legislation which is found within the Acquired Brain Injury (ABI Medicaid Waiver) Program.

In response to this letter of my team meeting minutes written by the office of protection and advocacy for persons with disabilities the Dept of Social Services DSS is saying that they will not do anything about employment options LLC discriminating and giving false documents to DSS saying they were providing services for me that they were not providing me with and making up false accusations about me.

Then after I started saying something about it and putting in a formal complaint with the Dept of Social Services and with the Commission on Human Rights and Opportunities following the suggestion of P&A all of a sudden now the Dept of Social Services wants to discuss it again. Been there done that! It’s the same old BS they will take your complaint and do nothing about it. The fact is, I don't need to talk about it!

The Dept of Social Services need to do their job they were hired to do by the federal government and remove Employment Options LLC as an approved allied ABI Medicaid waiver provider. I'm not the only survivor that they are discriminating against.

Jessica
Human Services Advocate PAIMI/PATBI
Office of Protection and Advocacy for Persons with Disabilities

“The Americans with Disabilities Act of 1990

2010-06-09T21:30:00.000-04:00

“The Americans with Disabilities Act of 1990[1] [2] (ADA) is a law that was enacted by the U.S. Congress in 1990. Its long title is "An Act to establish a clear and comprehensive prohibition of discrimination on the basis of disability." It was signed into law on July 26, 1990, by President George H. W. Bush , and later amended with changes effective January 1, 2009.[3]
The ADA is a wide-ranging civil rights law that prohibits, under certain circumstances, discrimination based on disability . It affords similar protections against discrimination to Americans with disabilities as the Civil Rights Act of 1964 [4] , which made discrimination based on race , religion , sex , national origin, and other characteristics illegal. Disability is defined by the ADA as "a physical or mental impairment that substantially limits a major life activity." The determination of whether any particular condition is considered a disability is made on a case by case basis. Certain specific conditions are excluded as disabilities, such as current substance abuse and visual impairment which is correctable by prescription lenses.On September 25, 2008, President George W. Bush signed into law the ADA Amendments Act of 2008 (ADAAA). This was intended to give broader protections for disabled workers and "turn back the clock" on court rulings which Congress deemed too restrictive

Sarah Jane & Friends Thank Chairman Conyers in NYC Judiciary Committee Members Recognized for Endorsing PABI Plan

2010-05-26T16:37:00.000-04:00

Chairman John Conyers and the U.S. House Judiciary committee received a public thank you from the Sarah Jane Brain Foundation for continuing their efforts to discover ways to prevent and identify sports-related brain injurys in youth athletes by hosting another congressional hearing in New York City on Monday, May 24,2010

Sarah Jane & Craig Sears

Jennipher Dickens Patrick Donohue Christopher Sarah Jane & Craig Sears

http://www.thebrainproject.org

State of Connecticut Commission On Human Rights And Opportunities 350 Fairfield Avenue 6th Floor Bridgeport, Ct. 06604

2010-05-21T12:53:00.002-04:00

May 21, 2010

Craig Sears ###

State of Connecticut Commission On Human Rights And Opportunities
Southwest Region Office
350 Fairfield Avenue 6th Floor
Bridgeport, Ct. 06604

Merit Assessment Review Reconsideration Request
Case Name: Sears v. State of CT. – DSS
CHRO Case NO.: ###
EEOC Case No.: N/A

In an effort to advocate for myself and all those individuals who are protected by the established legislation which is found within the Acquired Brain Injury (ABI Medicaid Waiver) Program I am applying for “Reconsideration” of the State of Connecticut’s Commission On Human Rights And Opportunities decision to dismiss my complaint which was based on “ No Reasonable Possibility”. In doing so I will be advocating further for both acknowledgement of and retribution for those laws which have been violated that are stated within the Fair Hearing Statement for Craig Sears which was prepared by ###, Human Services Advocate 10/6/09 from the State of Connecticut Office of Protection and Advocacy for Persons with Disabilities.( Please refer to the enclosed documentation of this Fair Hearing Statement which is being resubmitted for the second time).

In compliance with your rules and regulations I am requesting as provided in CONN.GEN.STAT. 46a-83(e) in writing within 15 calendar days “Reconsideration” under the specific grounds mentioned below (please refer to the specifics of my case: Case Name: Sears v. State of Ct.-DSS, CHRO Case No.: ###, EEOC Case No.: N/A)

1) An error or fact or law should be corrected.
Some of the oversights that I am referring to are mentioned below but are not limited to those listed. For additional oversights please refer to the initial documentation which was submitted consisting of over 500 pgs of pertinent information.

a. While the State of Connecticut Commission on Human Rights and Opportunities has established “No Reasonable” possibility under Merit Assessment Standard 4 by establishing in their minds that no allegations of discrimination could be substantiated with Quality Living Management Solutions Service Provider LLC (QLMS) the initial complaint that I submitted was intended to be directed at the Department of Social Services because it is ultimately the responsibility of the Department of Social Services to enforce the laws of the ABI Medicaid Waiver which are clearly demonstrated in the Fair Hearing Statement that was developed by the State of Connecticut Office Of Protection And Advocacy For Persons With Disabilities by ### 10/06/09. I believe your response was directed at the specific service provider (QLMS) at the time which was in my mind a clear error in fact and law which should be corrected.

b. In response to your findings please review the literature that documents the time line of the events which should reveal that I dismissed the team of caregivers that Quality Living Management Solutions Service Provider LLC was providing prior to the allegation of my misconduct.

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

d. It should be known that I identified new service providers which were in place to provide services in an effort to maintain complete continuity in care as dictated by the ABI Medicaid Waiver and the Department of Social Services failed to effectively authorize payment to facilitate a smooth transition to a new provider to maintain proper care for my health and wellness.(again refer to the Fair Hearing Request 10/6/09) Please also refer to the e-mails that I am resubmitting which document and substantiate my complaint of the Department of Social Services failure to implement services in a timely manner so as to uphold the laws of the ABI Medicaid Waiver.

e. It is my belief which is based on conversations with the office of Protection and Advocacy for Persons with Disabilities (###) that this institution was not contacted to substantiate my allegations nor were they conferred with in any way by CHRO to seek out the TRUTH of this matter; further more it was this agency that directed me how to proceed to have my Civil Rights protected and I quote, “ In addition to the legal resources I gave you, you should consider filing a discrimination complaint with the Commission on Human Rights and Opportunities(CHRO).” I am following this suggestion and I am resubmitting my request for “RECONSIDERATION”.

2) New Evidence has been discovered which materially affects the merits of the case and which, for good reasons, was not presented during the investigation.
a. Please refer to pg.4 of the Merit Assessment Review where it states “That there was a brief breach in the continuity of those services” This statement refers to the time period between August 29, 2009 and at least October 6, 2009 where I was without services which is stated in the Fair Hearing Statement. This substantiates that I was left without services which is in violation of the ABI Waiver (refer to Fair Hearing Statement).

b. By CHRO dismissing my case CHRO is not upholding the very laws that they have implemented to protect and serve this specific population that requires specialized care due to the nature of the resulting impairments that may occur at different times under various environmental conditions.

3) Other good cause for reconsideration has been shown.
a. In addition to the enclosed documents please consider the following information which supports my credibility as an advocate for this population.

I. I was a member of the class action law suit in the 1990’s that worked to implement the Acquired Brain Injury Medicaid Waiver in the state of Connecticut ( the very program that has been put in place to protect my needs which is now failing to be instituted by the Department of Social Services)

II. I have been an integral public figure in the quest for services for this population over the years which links my life experience and face with this issue (posters, television shows, radio, public appearances, work books, state banners, etc.).

III. I have served as a board member on the Connecticut TBI Advisory Board Committee for the past five years.

IV. I now serve on the Sarah Jane Brain Foundation International Family Advisory Board Committee for the Pediatric Acquired Brain Injury (PABI Plan) for the past year and a half.

V. ETC. http://www.google.com/profiles/craig.sears.tbi

In closing the retribution that I am seeking is listed in my initial complaint.

A copy was mailed to Attorney ### #. ###
State of CT –DSS
25 Sigourney Street
Hartford CT 06106-5033
Cert # ###
Sincerely,

Craig Sears

see my blog: State of Connecticut Department of Social Services discriminating against and taking advantage of Brain Injury Survivors on the ABI Medicaid waiver

National Plan for Pediatric Acquired Brain Injury

2010-04-21T16:44:00.000-04:00

My name is Craig Sears I am a survivor of Traumatic Brain Injury trying to help myself, and the children of tomorrow from ever having to experience this horror and heartache of TBI by using my case as an example to show how brain injury is being discriminated against and taking advantage of ignored by the US States. And how easy it is for program providers to do the same to brain injury survivors. Traumatic Brain Injury is the # 1leading cause of death and disability among children and young adults in this country. I am advocating to make people more aware of the national pediatric acquired brain injury plan. For myself I wish on that July afternoon 21 years ago 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

Traumatic Brain Injury (TBI) is a leading cause of death and disability among children and young adults in the United States. Each year, an estimated 1.5 million Americans sustain a TBI. That's 8 times the number of people diagnosed with breast cancer and 34 times the number of new cases of HIV/AIDS each year. As a consequence: *50,000 people die each year. *230,000 people are hospitalized annually and survive. *80,000 to 90,000 people experience the onset of long-term disability each year. *The cumulative result is that today an estimated 5.3 million people - 2% of the U.S. population - are living with a permanent TBI-related disability. THIS (featured in the URL Address Below) IS ONE profound example of what we aim for and advocate -- to believe that there is hope, and understand the need to help contribute to miracles to restore health, life, and to create the ability to live life productively toward the goal of everyone understanding how wonderful it is to live life happy, altruistically, and well.

Pediatric Acquired Brain Injury PABI. This is a brain injury to anyone under the age of 25 years. The brain doesn't fully mature until that age. PABI includes all brain injuries caused by trauma including falls, motor vehicle MV accidents, being struck by an object, violence/assault, sports incidents, gunshot wounds, and non-MV bicycle accidents. PABI is the leading cause of death and disability for children under 15 years of age in the United States. Over 5,000 deaths occur annually due to PABI, over 17,000 children annually suffer from permanent disability due to PABI, and over 1,000,000 children are hospitalized each year due to PABI. In addition, since most children's brains aren't considered developed until age 21 or 22, many of the Military Veterans returning from Afghanistan and Iraq with TBI are actually considered PABI. Pediatric Acquired Brain Injuries PABI include all traumatic causes plus brain injuries caused by brain tumors, strokes, meningitis, insufficient oxygen, poisoning, ischemia and substance abuse

ABI Medicaid waiver, If I'm not being taken advantage of by State DSS I'm being taken advantage of by program providers

2010-03-07T12:46:00.038-05:00

Talk about being taken advantage of, Employment Options LLC 91 Willenbrock Rd Oxford CT 06478 ABI Medicaid Waiver Program provider? when you look below you will see e-mails that I sent to EO about the way they handled my case and the way they directed their staff to work with me the services I get on my waiver are supported employment independent living skills training ILST. This letter is from Staff that Employment Options LLC hired to work with me Staff was told they cannot work with me on my supported employment along with I called Allied Medicaid waiver service providers turns out the staff was not ILST approved in short that means I got no services at all" Click on it to enlarge

When I complained about the “fact” services were not being provided, EMPLOYMENT OPTIONS, LLC Michele L. Zurko – Smith 91 Willenbrock Road Oxford CT 06478 3a accused me of being unreasonable, confrontational and defamed my character by stating they had concerns for me working with female staff and implying I had acted inappropriately with female staff. Employment Options LLC 91 Willenbrock Road Oxford CT 06478 unit 3a, this is an email and letter from my ABI Waiver Provider Doctor about the accusations made by EO

Hi Craig

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

Dr, Tariq, PhD., M.S., MBA

Letter from my ABI Waiver Provider Doctor about the accusations made by EO

NeuroStrategies, Inc.
Dr, Tariq, PhD., M.S., MBA
neurostrategies@earthlink.net

RE: Shannon and Employment Options LLC

Attention: Craig Sears

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

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

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

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

Respectfully,

Dr, Tariq, PhD., M.S., MBA

To: State of Connecticut, Commission on Human Rights & Opportunities
Rowland State Government Center
55 West Main Street, Suite 210
Waterbury, CT 06702-2004

And

Quality Assurance Manager Xxx
Allied Community Resources
Ph: 860 627-9500 ext 126
Fax 860 627-0230
　
From Craig Sears

1. The respondent is Employment Options whose business address is 91 Willenbrock Road, Oxford, CT 06478

2. I am a person with a physical disability, specifically my condition is known as traumatic brain injury (TBI) in and around October 2009 until in or around April 2010, the respondent refused to provide me services including supportive employment services and independent living skills training services.

3. Respondent reported to the Dept. of Social Services that they were providing me services, but I did not receive the services respondent had committed to provide me and for which they were compensated for providing me through a program known as the ABI Medicaid Waiver allied community resources program. Respondent sent unqualified individuals such as xxx to provide me independent living skills traing for which he was not qualified because he lacked the appropriate certification.

4. Respondent sent me support employment staff and advised them not to provide me any supported employment services. Please refer to letter written by xxx on 1/4/10... This made it appear as if they were providing me services when in fact they were not providing me services to assist me in my work as an advocate.

5. I made complaints with the Department of social services and protection and advocacy and Dr, Tariq, PhD., M.S., MBA Regarding employment options unethical and illegal treatment of me. Please refer to letter written by Dr, Tariq, PhD., M.S., MBA and, Jessica from P&A ABI Waiver Provider Complaint Meeting

6. When I complained about the fact services were not being provided respondent unreasonable confrontational and defamed my character by stating they had concerns for me working with female staff and implying I had acted inappropriately with female staff. Please refer to letter written by Dr, Tariq, PhD., M.S., MBA and, Jessica from P&A ABI Waiver Provider Complaint Meeting

7. Respondent replaced the female staff person with another female. Please refer to letter written by, Jessica from P&A ABI Waiver Provider Complaint Meeting

8. And I quote: Hi Craig

You are correct. Shannon denies every accusation made by EO. Wow!

Dr, Tariq, PhD., M.S., MBA

9. You can also Please refer to State of Connecticut Department of Social Services Acquired Brain Injury (ABI) Invoice And Time Sheets in the copies allied community resources sent to me Date 5/7 & 1/15 & 1/29 & 2/12 & 2/26 etc! There are all billing for xxx providing me supported employment services that I did not receive Please refer to letter written by xxx along with the fact that xxx stopped working for Employment Options LLC 91 Willenbrock Road, Oxford, CT 06478

10. My acquired brain injury ABI program is based on assessment of my condition and I never have had any issues with women. Please refer to letter written by Dr, Tariq, PhD., M.S., MBA Date and, Jessica from P&A ABI Waiver Provider Complaint Meeting

11. Respondent stated they didn't agree with my views on reforming the ways persons with TBI are treated and served and that was the reason they were refusing to provide me services to complete my advocacy work. You have my permission to speak with Dr, Tariq, PhD., M.S., MBA and Jessica from P&A

12. Respondent discriminating against me on the basis of my physical disability traumatic brain injury in failing to provide me with equal services in comparison to others they provide such services.

13. I am requesting that Employment Options LLC 91 Willenbrock Road, Oxford, CT 06478 be removed as a allied community resources ABI Medicaid Waiver Provider I am also requesting a complete investigation into my case and every ABI TBI survivors case they are providing services for as a approved allied community resources ABI Medicaid Waiver Provider

Sincerely Craig Sears

After the meeting I asked questions in an effort to advocate for myself and all those individuals who are protected by the established legislation which is found within the Acquired Brain Injury (ABI Medicaid Waiver) Program.

In response to this letter of my team meeting minutes written by the office of protection and advocacy for persons with disabilities the Dept of Social Services DSS is saying that they will not do anything about employment options LLC discriminating and giving false documents to DSS saying they were providing services for me that they were not providing me with and making up false accusations about me.

Then after I started saying something about it and putting in a formal complaint with the Dept of Social Services and with the Commission on Human Rights and Opportunities following the suggestion of P&A all of a sudden now the Dept of Social Services wants to discuss it again. Been there done that! It’s the same old BS they will take your complaint and do nothing about it. The fact is, I don't need to talk about it!

The Dept of Social Services need to do their job they were hired to do by the federal government and remove Employment Options LLC as an approved allied ABI Medicaid waiver provider. I'm not the only survivor that they are discriminating against.

Sincerely Craig Sears

What is there to discuss we had discussed it after I had given you documented proof that they violated my rights, not only that even after Employment Options LLC 91 Willenbrock Rd Oxford, CT 06478, giving false documents back to DSS saying they were providing services that they were not providing me you still say that you / DSS were not going to do anything about EO.

Then they made accusations about me and gave absolutely no proof of those comments to back up those accusations, it doesn't take a brain surgeon to figure out that they were for covering up not providing the service I need.

I call that Defamation of character /discrimination, plus you have already said you were not going to do anything about EO. See attached e-mail for my response to that comment while you are at it look at the ABI Medicaid waiver laws they went against them and your letting it go.

Doesn't take a brain surgeon to figure out that discrimination plays a big part in the way brain injuries are treated by the Dept of Social Services (DSS)

Sincerely Craig Sears

State of Connecticut Department of Social Services discriminating against and taking advantage of Brain Injury Survivors on the ABI medicaid waiver

2010-01-31T16:35:00.028-05:00

My personal experience of how Victor Estay and his supervisor Kenneth R. Smith from the state of Connecticut Department of Social Services 888 Washington Boulevard Stamford, CT 06901 are taking advantage of Disabled traumatic brain injury survivors , If this is happening to you or someone you know first contact the office of protection and advocacy for persons with disabilities and a caregiver parent. Give them all this information and ask them to help you, be sure to contact your state Commission on Human Rights and Opportunities. I did it’s called Discrimination Gen. Stat. Section 46a-58 64(a) (1) & 46a-82
________________________________________

My letter on 9 / 28 / 09

To: U.S Congressman Jim Himes CT, 211
State Street 2nd Floor Bridgeport, Ct 06604
www.himes.house.gov

(Please Help me.)
My name is Craig Sears I am a traumatic brain injury survivor I spoke to you in your office in Bpt, CT. About 3 or 4 months ago about the Sarah Jane brain foundation National PABI plan. 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 am writing this because this is a known fact of how the state of Connecticut (Discriminates) against me as a traumatic brain injury survivor as of 9/2/09 everything I have worked on in the past six years I've lost. And now I could feel myself slipping away because the help I need to be able to function in community outside of nursing homes and institutions is being refused by the state of Connecticut Department of Social Services! ) (No matter how they put it they have refused to help me! or what they say there doing about it! (Been there done that.)

I don't know what tomorrow's going to bring for me. I do know all too well as a brain injury survivor what life is like with no help. U.S Congressman Jim Himes I do not want to go back to that cruel and unusual life on the streets or locked in an insane asylum or a prison cell. This is why I'm asking you for help I'm also sending a letter/copy to the White House I've had excellent response from president Barack Obama about the number one leading cause of death and disability for children and young adults in this country.

To President Barack Obama and our leaders and lawmakers, I plead with
You to put the Sarah Jane Brain Project's national PABI plan in place so others don’t have to go through what I am/have. This is cruel and unusual punishment because I/they have a disability called PABI/PTBI.

For the past six years I've been working with either DMHAS the head of the ABI waiver servers for the state or/and the Connecticut Department of Social Services. In the 1990s I became a spokesman for the Connecticut Brain Injury Association for Connecticut's Acquired Brain Injury Medicaid Waiver implemented in 1999. This waiver allows the state to permit organizations to provide non-medical services to people with TBI enabling them to live in the community outside of nursing homes and institutions.

I became a member of that class action lawsuit back in the 90s because (of /this is exactly what the state of Connecticut was doing to me then) the only difference now is I have been working my/ this/ a Program.

That has been set up by my team members to assists me because
Of my special needs due to my disability. Because I have been working my program the way it was set up for my needs. And I am very happy with the services I get. Look at my history. Look how well I've been working with my program and how well that program is working for me and the difference it is mocking in my life. That’s what it was made for. That's why I became an advocate for the class action lawsuit back in the 90s. In other words it's working for me. Why all of a sudden because a program provider not only misled/lied to me and the state of Connecticut why do I need an evaluation it's a known fact I'm disabled and my program is helping me.

And then the state of Connecticut DSS has decided not to give me the services that I have a legal right to get. Another proven fact in the copies below, Plus I have copies of all my service plans and my non-medical ABI waiver plan I also have all the copies of all the conversations and e-mails going back and forth between team members and my DSS worker Stamford Connecticut office Victor Estay and his supervisor Kenneth R Smith, same office. And Dr. Annemarie Murphy PhD...
________________________________________

From: Jessica
To: kenneth.smith@ct.gov; Victor Estay
Subject: C.S. appeal

Good morning gentlemen,
Having received no reply from DSS to my previous e-mails, I have advised Mr. Sears to move forward with the appeal process. I have attached the relevant documents to this e-mail for your review.

STATE OF CONNECTICUT

OFFICE OF PROTECTION AND ADVOCACY FOR PERSONS WITH DISABILITIES
60B Weston Street, Hartford, CT 06120-1551
1-800-842-7303 (toll-free CT only) (V/TTY)
(860) 297-4300 (V) - (860) 297-4380 (TTY)
(860) 566-8714 (facsimile)
www.ct.gov/opapd

Department of Social Services
Office of Legal Counsel
Regulations and Administrative Hearings
25 Sigourney St.
Hartford, CT 06106

Re: Craig Sears

To Whom It May Concern:

I am currently representing Mr. Sears, a client of the Department of Social Services ABI Medicaid Waiver Program. I have attached a release form signed by Mr. Sears. On behalf of Mr. Sears I am requesting a hearing to address an informal suspension of his services.

Please schedule a fair hearing for Mr. Sears and send written notification to both Mr. Sears and I. I can be reached at (860), or through the above address.

Sincerely,

Jessica,
Human Services Advocate
Protection and Advocacy for Individuals with Traumatic Brain Injury/
Protection and Advocacy for Individuals with Mental Illness

cc: Victor Estay
Craig Sears

State of Connecticut
Office of Protection and Advocacy for Persons with Disabilities

From: Jessica
Subject: Fwd: C.S. appeal

Good morning Craig,
Below is a copy of the e-mail I issued to Victor Estay and Kenneth Smith at DSS, along with the relevant attachments. A complete set of the necessary documents was faxed to DSS' Office of Legal Counsel. Please let me know if you have any questions, or receive any response.
Thank you,

Jessica
Human Services Advocate PAIMI/PATBI
Office of Protection and Advocacy for Persons with Disabilities
60 B Weston Street
Hartford, CT 06120
1.800.842.7303 (V and TDD)
TDD 860.297.4380
Fax 860-566-8714

Good morning gentlemen,
Having received no reply from DSS to my previous e-mails, I have advised Mr. Sears to move forward with the appeal process. I have attached the relevant documents to this e-mail for your review.

Jessica

Human Services Advocate PAIMI/PATBI
Office of Protection and Advocacy for Persons with Disabilities
60 B Weston Street
Hartford, CT 06120
1.800.842.7303 (V and TDD)
TDD 860.297.4380
Fax 860-566-8714

STATE OF CONNECTICUT

OFFICE OF PROTECTION AND ADVOCACY FOR PERSONS WITH DISABILITIES
60B Weston Street, Hartford, CT 06120-1551
1-800-842-7303 (toll-free CT only) (V/TTY)
(860) 297-4300 (V) - (860) 297-4380 (TTY)
(860) 566-8714 (facsimile)
www.ct.gov/opapd

Department of Social Services
Office of Legal Counsel
Regulations and Administrative Hearings
25 Sigourney St.
Hartford, CT 06106

Re: Craig Sears

To Whom It May Concern:

I am currently representing Mr. Sears, a client of the Department of Social Services ABI Medicaid Waiver Program. I have attached a release form signed by Mr. Sears. On behalf of Mr. Sears I am requesting a hearing to address an informal suspension of his services.

Please schedule a fair hearing for Mr. Sears and send written notification to both Mr. Sears and I. I can be reached at (860) or through the above address.

Sincerely,

Jessica,
Human Services Advocate
Protection and Advocacy for Individuals with Traumatic Brain Injury/
Protection and Advocacy for Individuals with Mental Illness

cc: Victor Estay
Craig Sears

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

Jessica
Human Services Advocate PAIMI/PATBI
Office of Protection and Advocacy for Persons with Disabilities
60 B Weston Street
Hartford, CT 06120
1.800.842.7303 (V and TDD)
TDD 860.297.4380
Fax 860-566-8714
________________________________________

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

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

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

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

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

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

Zackery Lystedt Brain Project subject of announcement by Florida Gov. Charlie Crist during Super Bowl week Nationwide Sports Concussion Initiative Begins at UM Miller School of Medicine with the Sarah Jane Brain SJBF and ACSM

2010-01-30T18:25:00.001-05:00

MEDIA ADVISORY
FOR IMMEDIATE RELEASE

MIAMI - A national initiative to reduce sports-related concussions in every state will be announced by Florida Gov. Charlie Crist during Super Bowl week at the University of Miami Miller School of Medicine. The principles of the initiative were established by the Zackery Lystedt Law in the State of Washington. The Zackery Lystedt Brain Project is spearheaded by the Sarah Jane Brain Foundation in partnership with the American College of Sports Medicine. The Miller School is the foundation’s National Lead Center for acute care in brain injury.

The initiative is named after 17-year-old Zackery Lystedt, who sustained a debilitating brain injury playing football in 2006 after returning to play too quickly following a concussion. The State of Washington passed the Zackery Lystedt Law in May 2009. The law requires educating youth athletes, their parents and coaches about the risks associated with concussion and head injuries, removing athletes from play if a concussion is suspected, and requiring medical clearance by a licensed healthcare provider before sending them back into a game, practice or training. Oregon last year also passed a similar measure, dubbed "Max’s Law". The goal of the Zackery Lystedt Brain Project is to advance the core principles throughout the country through public awareness, training, legislation and further research.

WHO:
* The Honorable Charles J. Crist Jr., Governor of Florida
* Pascal J. Goldschmidt, M.D., Senior Vice President for Medical Affairs and Dean of the University of Miami Miller School of Medicine
* Also participating will be representatives from the Sarah Jane Brain Foundation, the American College of Sports Medicine, the Washington Brain Injury Association, the Oregon Brain Injury Association and many leading experts in youth sports concussions

WHAT:
Zackery Lystedt Brain Project - national initiative dealing with youth sports concussions

WHERE:
Lois Pope Life Center (7th Floor APEX Auditorium)
University of Miami Miller School of Medicine
1095 Northwest 14th Terrace
Miami, Florida

WHEN:
Wednesday, February 3, 2010 at 3:00 p.m. EST

The Sarah Jane Brain Foundation has been working since October 2007 to improve the system of care for children and young adults (up to age 25) with brain injuries. The University of Miami Miller School of Medicine was named in June 2009 as the Sarah Jane Brain Foundation’s National Lead Center for Acute Care, as part of a network of 52 State Lead Centers of Excellence to better prevent, identify and treat all Pediatric Acquired Brain Injuries (PABIs). PABI is the number one cause of death and disability for children and young adults in the United States. The American College of Sports Medicine is the largest sports medicine and exercise science organization in the world.
____________________________________________________
States Taking the Lead Addressing Concussions

Published: January 30, 2010

As dozens of state lawmakers consider legislation to improve awareness and treatment of concussions in youth sports, the movement is resembling a music style or weather pattern: what started in the Pacific Northwest is wafting across the United States.
Last year Washington and Oregon passed the first concussion-specific laws covering scholastic sports. Each mandated education for coaches, immediate removal from play of any athlete suspected of a concussion in a game or practice and proper medical clearance before that athlete could return. Washington’s in particular — named after Zackery Lystedt, a teenager who in 2006 sustained a serious brain injury playing football — is a template for other states formulating similar legislation.
The trend will get a name next week when the Zackery Lystedt Brain Project is formally announced at the Super Bowl. Spearheaded by the Sarah Jane Brain Foundation and the American College of Sports Medicine, the initiative will continue those organizations’ push for states to enact laws similar to Washington’s. Florida, Massachusetts, New Jersey and New York are among those with bills in the works.
“We are going to get maybe 24 states passing the laws or making serious headway this year,” said Patrick Donohue, founder of the Sarah Jane Brain Foundation. The national organization focused on youth brain injuries is named after his 4-year-old daughter, who was seriously injured when shaken by a nurse as an infant.
Donohue added: “Washington’s law is a work of art, and it took almost two years, but they’ve already done the hard work. We don’t need to take two years in every state.”
The laws cover youth sports beyond football; other contact sports, particularly girls soccer and basketball, have recently been recognized as breeding grounds for concussions that often go ignored or are mistreated.
About 1.2 million teenagers play high school football in the United States, with another three million participants ages 14 and younger. Dawn Comstock of Ohio State University, the primary researcher tracking youth sports injuries nationally, said youth football players sustained about 140,000 concussions per year, with as many as 40 percent of them returned to the field sooner than modern guidelines would suggest.
Youth sports concussions will be the primary focus of a House Judiciary Committee forum on Monday in Houston, the third gathering of the committee to examine brain injuries in football. The first two dealt mostly with what experts considered the subpar treatment of concussions in the N.F.L., which responded by adopting several new procedures to improve concussion management — particularly barring a player suspected of having a concussion from returning to the same game or practice. An anticipated trickle-down effect followed. The N.C.A.A. announced that it would consider similar measures, and more states started looking at adopting laws like those in Washington and Oregon.
One of those is Florida, where Gov. Charles J. Crist Jr., a Republican, not only plans to push for a Lystedt-type law in his state, but also to espouse its purpose to his fellow governors at their national meeting next month.
A challenge for many states, particularly rural ones, will be finding the medical personnel to comply with the laws. State Senator Daniel L. Squadron of New York, a Democrat and the sponsor of his state’s bill, said that requiring doctors on every sideline was distractingly costly for this first step.
“We are in a world where certain communities have the resources or knowledge of these issues, and others don’t, and it’s catch as catch can,” Squadron said. “The first piece is make sure that coaches catch the signs early to help prevent these injuries. And then make sure there’s an independent medical professional making the return-to-play decision so that you don’t have the issues of someone related to the team making the decision. Frankly, it makes life easier for the coaches and trainers.”
The federal government is considering ways to ease the financial burden. The federal Concussion Treatment and Care Tools Act, which would amend the Public Health Service Act, commits about $10 million “to ensure proper prevention, diagnosis and treatment of sports-related concussions in U.S. high schools and middle schools.”
The money is expected to principally defray costs of education programs and neuropsychological testing for athletes.
“As the National Football League bolsters its own concussion treatment programs, many parents are wondering if enough attention has been devoted to concussions in school sports,” said Senator Robert Menendez, Democrat of New Jersey, who is sponsoring the bill. “We want to make sure that the most advanced strategies are being implemented for our high school and middle school athletes.”
Most of the movement will have to come from the states, however, because of their more direct control over education. Representative Linda Sanchez, Democrat of California and one of the House Judiciary Committee’s biggest supporters of concussion reform, said that their hearings were meant to bring about change well beyond the N.F.L. level.
“I haven’t abandoned the idea of legislation at the congressional level if there’s something that can be done — I’ve been trying to think of something that can be uniform across all 50 states,” Sanchez said. “ But the awareness that we’re seeing now at the state level, that definitely was a motivating factor in having the hearing.”

Updated: February 7, 2010, 8:58 AM ET
Concussions a public health issue

ESPN.com's Stephania Bell discuss new laws protecting our youth from concussions with Dr. Gillian Hotz.Tags: Men's College Basketball, NFL, High School, MLB, Women's College Basketball

MIAMI -- Concussions are the hot topic in the NFL right now, with increased concern about the brain health of football players once their careers are over. NFL commissioner Roger Goodell has made it clear he is concerned about the issue and has implemented several directives, including return-to-play rule changes.
Congressional members have expressed concern about the issue for the general public as well. In October, a panel of House Judiciary Committee members held hearings related to head injuries in football, asking medical experts, equipment manufacturers, former players and administrators of college and youth sports to explain how they are working to address the issue. The discussion about the risks of long-term brain damage after repeated impacts has led to a broader conversation about how concussions affect athletes of all ages.
There appears to be little in the medical world that is definitive when it comes to this subject, but it seems that everyone agrees: Concussions are serious injuries that need to be properly recognized and appropriately managed to avoid catastrophic consequences, particularly in the developing brain.
The Centers for Disease Control and Prevention reports a sports-and-recreation-related concussion rate of approximately 3.8 million per year. With millions of youths engaged in a variety of sports, this issue has become a matter of national public health and safety. The discussion about concussions raises a number of questions. Here are some of those questions and their answers:
What exactly is a concussion?

Todd Kirkland/Icon SMIWashington running back Clinton Portis suffered a concussion in November. He has said he expects to be back with the team for 2010.
A concussion is a form of brain injury. When the head accelerates through space, the brain also accelerates within the skull. The shear forces to which the brain is subjected during violent movement can result in damage to nerve cells throughout. Technically speaking, a concussion itself is an electroneurophysiological event. As a result of damage to nerve cells within the brain, the brain temporarily fails to process information in a normal way. The injury can occur as a result of a blow to the head, but concussions also can be noncontact injuries -- think severe whiplash. An individual might lose consciousness, but not necessarily. In fact, some very serious concussions happen without the patient ever losing consciousness.
Is every concussion the same?
No. Concussions are like snowflakes; no two are exactly alike. Concussions represent a spectrum of brain injury. Although all are serious because they signify injury to the brain, their effects can vary widely. Some concussions result in short-term mild symptoms; others lead to more severe symptoms that can last for weeks, months or even permanently.
Is there any imaging device that can confirm a concussion?
No. MRIs or CT scans, although critical in identifying skull fractures or bleeding within the brain, are not necessarily helpful in evaluating a concussion. After a concussion, imaging devices might not show structural changes or areas of deficit in the brain. Medical practitioners must rely primarily on the presence of signs and symptoms to support the diagnosis of a concussion.
What are those signs and symptoms?
If an athlete loses consciousness, he or she has suffered a concussion. But as mentioned earlier, a concussion can occur without a loss of consciousness. Other signs (things that others can observe) can include memory loss of events before or after the incident, confusion, slurred speech, vacant staring or disorientation. The most common symptoms (things that the patient experiences) are headache, nausea, vomiting and dizziness. Other complaints include sensitivity to light, blurry vision, irritability or difficulty concentrating.
Beyond signs and symptoms, are there any tools to evaluate concussions?
Because concussions impact the brain's ability to process information, often in subtle ways, a key component of the evaluation process is neurocognitive testing. This involves a battery of tests to evaluate things such as brain processing speed, memory and reaction time. Testing done before an athletic season can provide baseline data against which future tests after an injury can be measured. Even when a player reports the absence of symptoms and there are no observable signs, a neurocognitive test can show a deficit in information processing, indicating that the brain has not yet fully recovered.
The test, which the NFL and MLS use for all their athletes, is ImPACT (Immediate Post-Concussion Assessment and Cognitive Testing), which was developed in the early 1990s by Drs. Mark Lovell and Joseph Maroon of the University of Pittsburgh Medical Center. ImPACT is the most widely used test, but Maroon, a neurosurgeon at UPMC and team neurosurgeon for the Pittsburgh Steelers, said this type of testing is still not reaching nearly enough youth athletes. "There are 18,000 high schools in the United States, but there is no form of neurocognitive testing in 16,000 of them," he said. "We have a long way to go."
As it stands, the only way to really assess the seriousness of a concussion is after the symptoms have gone away. If an athlete fully recovers within hours, the injury was mild. If an athlete experiences symptoms weeks or even months later, the injury was more substantial. There is no way to know immediately with any degree of certainty just how significant the impact on the brain is with any single concussion, so it makes sense to treat athletes who suffer these injuries with uniform and consistent guidelines to optimize their safety.
What is the treatment for a concussion?
One of the key elements in assisting the brain to recover after a concussion is rest. It is important to refrain from athletic activity and to rest the brain from strenuous cognitive or mental activity such as reading, writing, watching TV or working on the computer. For a young athlete, this might mean time away from the classroom as well as the playing field.
When is it OK for an athlete to return to play?
This is the most hotly debated question right now. Recovery occurs at different rates, so there is no universal timetable. An athlete must be free of all signs and symptoms at rest and be free of all signs and symptoms with physical activity. In the NFL, a player must demonstrate that his neurocognitive function has returned to preinjury levels as established by the ImPACT test. Many high schools or other youth programs do not have any form of neurocognitive testing in place. The hope is that this will change with increased education and awareness. The decision to return to play should rest in the hands of a licensed medical provider specifically trained in the area of concussion evaluation and management. This frees athletes, coaches and family members from making what really constitutes a medical judgment.
Why is this issue so critical for youth athletes?

AP Photo/Bob LeveyCameron Schlegel, a senior at Manvel (Texas) High School, suffered concussions during football games in October and November. Upon advice of school medical staff and his doctor, he did rehab before his health was restored. He is with his mother, Trish.
The developing brain is more susceptible to serious injury after a concussion. The developing brain is also more at risk for second-impact syndrome, which occurs when an athlete suffers a second blow to the head before he or she has fully recovered from an initial concussive event. In these instances, the consequences can be catastrophic, resulting in permanent brain injury or even death. In addition, because young athletes are under the age of legal decision-making, they need others to advocate for their well-being. Legislation such as the Zackery Lystedt Law helps take the decision of when it is safe to return to play out of the hands of non-medical providers. The format of the legislation allows for individual medical evaluation, which is essential with these types of injuries.
What is the Zackery Lystedt Law?
It is a law enacted in May 2009 that is named after a 13-year-old football player from Washington who suffered a debilitating brain injury after a concussion. In Zackery's case, the concussion alone was not the issue. Zackery returned to play -- in the same game -- after suffering that concussion, then later collapsed after helping lead his team to victory. He was left permanently disabled as a result of severe brain injury. The state of Washington, at the urging of Zackery's parents, enacted the legislation that requires, among other things, that a licensed health care provider clear a youth athlete before he or she returns to play after a concussion. Oregon passed a similar measure last year called Max's Law, named after Max Conradt, who had suffered a traumatic brain injury at age 17 while playing football in 2001.
In a cooperative effort between the Sarah Jane Brain Foundation and the American College of Sports Medicine, an initiative called the Zackery Lystedt Brain Project was launched Wednesday at the Miami Project to Cure Paralysis at the University of Miami School of Medicine. The goal of the initiative is to encourage all remaining states to enact similar legislation. Seventeen more states already have pending or upcoming legislation this year. An additional 26 states have Zackery Lystedt Brain Project concussion coalitions established and appear to be working toward drafting legislation. Five states -- Alaska, Delaware, Nevada, North Dakota and Wyoming -- do not have known concussion coalitions established. The hope is that when the governors of each state convene in late February at the National Governors Association winter meeting, all states will be on board with the initiative.
What are the myths about concussions?
That concussions are a problem only in football. Although there is a prevalence in football, concussions can occur in any sport. Soccer, hockey and basketball see their share. Dr. Gillian Hotz, director of the concussion program at the University of Miami School of Medicine, includes lacrosse players, divers and cheerleaders among her patients who have suffered concussions.
Concussions also are an issue not only for male athletes. Girls are catching up to boys in just about every area of athletic competition, and this is no different. In a recent study published in the Journal of Athletic Training, girls' soccer had the second-highest concussion rate per exposure -- exposure meaning any single game or practice -- after football. Concussions also can occur entirely outside of sports.
Another myth is that it's not really a concussion if you don't get knocked out. That is 100 percent wrong. The loss of consciousness is not a requirement for a concussion. It is particularly important to be aware of a concussion that yields relatively minor symptoms, because returning to play too soon afterward could result in catastrophic consequences.
What is being done in the field of research?

AP Photo/Paul SancyaU.S. Rep. Linda Sanchez, D-Calif., views an older NFL football helmet during a hearing in Detroit in January. The House Judiciary Committee heard from retired players about head injuries in football.
There is so much that is not yet known about concussions that it is a virtual wellspring for scientific study. Perhaps one of the biggest challenges is appreciating what exactly the brain is subjected to during a concussion because the brain is housed within the skull and is therefore virtually impossible to measure directly. Impact studies have been useful in terms of evaluating the durability of protective headgear, for instance, but they fall short when it comes to identifying the specific effects on the brain.
Dr. Steve Olvey, director of the neuroscience intensive care unit at Jackson Memorial Hospital in Miami and a fellow of the FIA Institute of Motor Sport Safety in Paris, believes that the next big wave of data will come from studies using accelerometers implanted in earpieces that can measure what forces the head is subjected to during violent impacts. The accelerometers, which can record information such as g-forces, serve much like little black box recorders that capture crash data in motorsports. By placing them within the earpieces used for communications, they are small enough to go unnoticed by an athlete, yet their position within the ear canal gives information from as close proximity to the brain as possible.
This year, all Formula One drivers will wear earpieces with accelerometers implanted in them. Olvey says that perhaps there will eventually be enough data on the forces that brains are subjected to in various sports to establish some sort of threshold for brain injury. Olvey also stressed the need for equipment differences between youth athletes and adults, specifically in the area of helmets, and noted that adult athletes might return to play after a concussion sporting a larger and heavier helmet that could tolerate impact better. But that might not be a wise choice for athletes under age 18. "Kids' necks are not as well developed," he said, "and bigger, heavier helmets may be problematic."
Is there anything people agree on when it comes to concussions?
If there's anything that's clear about concussions, it's that there is still far more to learn. There are very few absolutes in this area of medical practice, making it challenging for everyone -- parents, coaches, medical providers and athletes. Sports is an important part of a full life, and better management of sports-related injuries, including concussions, ensures a better overall sports experience. What we do know is that common sense and a conservative approach are the wise choice, especially when it comes to youth athletes. As the simple phrase from the Zackery Lystedt Law reads, "When in doubt, sit them out."
Stephania Bell is a physical therapist who is a board-certified orthopedic clinical specialist and a certified strength and conditioning specialist. She is a clinician, author and teacher with extensive experience in the area of orthopedic manual therapy and sports medicine. Her primary patient population consists of athletes and performing artists ranging from junior high school to professional.

The Sarah Jane Brain Foundation's Top Ten Most Notable Events of 2009 in Pediatric Brain Injury

2009-12-30T09:41:00.000-05:00

In case you didn't catch this story on tonight's NBC News, here is a link to their story about the Sarah Jane Brain Foundation's Top Ten Most Notable Events of 2009 in Pediatric Brain Injury and its connection to a local Ohio family (see the press release below and here is the link to the press release: http://www.thebrainproject.org/2009-12-29.asp).

Here is the link to the NBC story: http://tinyurl.com/yez22jz

FOR IMMEDIATE RELEASE
December 29, 2009 Press Contact: Jennipher Dickens
Jennipher@TheBrainProject.org or (212) 576-1180

TOP TEN MOST NOTABLE PABI EVENTS for 2009
Sarah Jane Brain Foundation Galvanizes Pediatric Brain Injury Community

NEW YORK, NY - The "Top 10 Most Notable Events in Pediatric Brain Injury for 2009" list was announced today by the Sarah Jane Brain Foundation, one of the largest national organizations focused on helping children and young adults with brain injuries.

SJBF Founder, Patrick Donohue, stated, "Since brain injury is the number one cause of death and disability for children and young adults in the United States, these are literally the most important events that occurred this year as it relates to our children’s health and well-being."

Top 10 Most Notable Events in Pediatric Brain Injury for 2009

10. John Travolta’s son, Jett, dies due to a Pediatric Acquired Brain Injury 2009 started off horribly for actor John Travolta and wife Kelly Preston as their 16-year-old son died on January 2, 2009, while the family was on vacation in the Bahamas. According to People Magazine, Jett had a history of seizures which was later determined to be the cause of his death (http://www.people.com/people/article/0,,20249865,00.html).

9. Apple Inc.'s "Baby Shaker" iPhone app approved and then removed from the App Store As you can see from this Associated Press video (http://www.youtube.com/watch?v=aLOCDrmlQwQ), in April the Sarah Jane Brain Foundation and the National Center on Shaken Baby Syndrome united families across the country, ultimately forcing Apple to pull the disgusting iPhone app they had for sale in their App Store, the notorious "Baby Shaker" app, which encouraged the shaking and killing of crying babies on iPhones.

8. Sarah Jane Brain Foundation goes global Over Thanksgiving weekend, The Sarah Jane Brain Foundation expanded its National Advisory Board to become an International Advisory Board, drawing in experts from around the world. It also launched the International Mind Brain Health and Education Initiative building upon the movement started at Cambridge, Harvard, OCED in Paris and the Initiative in Neuroscience and Education in Tokyo and catalyzed by the Pontifical Academy of Sciences (the first science academy in the world, founded in 1603 by Galileo and others) (http://newsblaze.com/story/20091127074018zzzz.nb/topstory.html)

7. Natasha Richardson’s death saves child’s life The tragic death of Natasha Richardson in March and the circumstances surrounding the symptoms around her head injury led Connie and Donald McCracken to suspect their 7-year-old daughter, Morgan, may have similar symptoms after being hit in the head by a baseball two days earlier. As you can read from this article, they took their daughter to their local hospital, where doctors immediately put her on a helicopter to Rainbow Babies and Children’s Hospital in Cleveland (http://www.momlogic.com/2009/03/natasha_richardsons_lesson_sav.php) where an emergency surgery saved her life.

6. October was "60 Minutes" (unofficial) Pediatric Brain Injury Awareness Month On October 11, 60 Minutes showed an episode focusing on sports concussions (a pediatric acquired brain injury) and the controversy surrounding University of Florida quarterback, Tim Tebow, and the decision not to play after sustaining a "mild" Traumatic Brain Injury - http://www.cbsnews.com/video/watch/?id=5377319n&tag=contentMain;contentBody; Two weeks later, on October 25, 60 Minutes showed an episode highlighting President Obama’s chief political strategist, David Axelrod, and his wife Susan’s struggles dealing with a daughter who suffers from epilepsy (a pediatric acquired brain injury) http://www.cbsnews.com/video/watch/?id=5419899n&tag=contentMain;contentBody.

5. Mark Ylvisaker, Ph.D., dies On March 23, a legendary expert in the field of PABI passed away. As per his obituary from the Brain Injury Association of America’s website, (http://www.biausa.org/ylvisaker.htm), Dr. Ylvisaker was a pioneer in the field of PABI and was one of the original Advisory Board Members of the Sarah Jane Brain Foundation who contributed to the writing of the National Pediatric Acquired Brain Injury Plan (PABI Plan). To view the remarkable curriculum vitae of Dr. Ylvisaker click here: http://www.thebrainproject.org/advisoryBoard/Mark_Ylvisaker/CV.pdf.

4. NFL airs first-ever concussion PSA On December 10 the National Football League launched the first Public Service Announcement addressing concussions, marking an important milestone in the quest to raise awareness of brain injury in sports (http://blogs.nfl.com/2009/12/10/nfl-psa-on-concussions-debuts-tonight). As you can read in one of the New York Times’ Alan Schwarz’ articles about sports concussions (http://www.nytimes.com/2009/11/26/sports/football/26concussions.html), Mr. Schwarz chronicles the issues of “mild” Traumatic Brain Injuries. If you would like more information about the largest sub-group of PABI (concussions) just read all of Mr. Schwarz’ stories in the New York Times over the past year.

3. "PABI Act" introduced in the U.S. House of Representatives On October 13, United States Representative G.K. Butterfield (NC-1), along with over 40 bi-partisan original co-sponsors, introduced H. Con. Res. 198 - in which Congress endorses the National Pediatric Acquired Brain Injury Plan (PABI Plan) as the best plan to prevent, identify and treat all acquired brain injuries from birth until 25 years of age and encourages federal, state and local governments to implement it. The measure currently has almost 90 co-sponsors and is expected to pass the House and Senate in January 2010. A local story about how the PABI Act impacts a family in Hawaii can be read here: http://www.starbulletin.com/editorials/20091023_Tiffany_Vara.html. Here is the link to the "PABI Act": http://thomas.gov/home/gpoxmlc111/hc198_ih.xml.

2. Zachery Lystedt Law enacted in Washington State On May 14, Washington State Governor Christine Gregoire signed the "Zachery Lystedt Law" into effect, to date the toughest youth sports concussion law in the country. It requires parents and youth athletes to sign an informed consent acknowledging the risk of head injury prior to practice or competition, and if a youth athlete is suspected of sustaining a concussion or head injury they will be removed from play until they receive a written clearance from a licensed health care provider. The law is named after an incredibly brave young teenager who was paralyzed from sustaining a second brain injury on the last winning play of the game after sustaining a concussion earlier in the game. Zach and his parents turned the tragedy into making changes for future youth athletes. For more details about the passage of the Zachery Lystedt Law visit the Washington State Brain Injury Association website which was instrumental in shepherding this landmark legislation for passage: http://www.biawa.org/lystedt.htm. This law has had a profound impact throughout the state of Washington in just several short months and you can view the video production by the University of Washington Harborview Medical Center (the SJBF State Lead Center in Washington) about youth sports concussions: http://www.youtube.com/watch?v=sEFQkMo_Oe0

1. First-ever National PABI Plan written and largest-ever national healthcare collaboration for PABI created During the first week of January, over 70 leading experts on the Advisory Board of the Sarah Jane Brain Foundation came to New York City and wrote the first-ever National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care which is universally accessible for all PABI families regardless of where they live in the United States. The PABI Plan was revealed in the first letter sent to President Barack Obama on his Inauguration Day (http://www.thebrainproject.org/2009-01-20.asp). The first phase of implementing the PABI Plan was announcing the largest healthcare collaboration in United States history with 52 State Lead Centers of Excellence (http://www.thebrainproject.org/2009-06-05.asp)

Honorable mention: New York Times columnist David Brooks gave a Sidney Award to Bethany Vaccaro (http://www.nytimes.com/2009/12/29/opinion/29brooks.html), whose brother sustained a brain injury due to blast injury at war. The essay Ms. Vaccaro wrote (http://www.theamericanscholar.org/shock-waves) highlights very eloquently the trials and tribulations sustaining a brain injury forces onto the entire family. While we would like to be able to mention them all, there are far too many stories of brave men and women coming home from war with brain injuries to list here.

About the Sarah Jane Brain Foundation: SJBF Founder Patrick Donohue’s four-year-old daughter, Sarah Jane, sustained a Pediatric Acquired Brain Injury (PABI) in 2005 when she was violently shaken by her baby nurse at five days old, causing a severe brain injury. Donohue launched the SJBF in 2007 to further collaboration and research in the field. For more information on the SJBF, visit www.TheBrainProject.org or call (212) 576-1180.

For more information on all forms of Pediatric Acquired Brain Injuries, visit www.TheBrainProject.org or call (212) 576-1180.

This has truly been a year of giving Thanks, Happy Thanksgiving everyone, Craig Sears a voice for traumatic brain Injury

2009-11-26T09:38:00.004-05:00

IN THE NEWS
November 26, 2009 at 8:00 a.m.

Sarah Jane Goes Global
Launch of International Mind, Brain, Health and Education Initiative

NEW YORK, NY - The Sarah Jane Brain Foundation (SJBF) announced today that its National Advisory Board has expanded to become an International Advisory Board with the addition of experts from across the globe.

The SJBF also announced the appointment of Dr. Stephanie Peabody, Visiting Scholar at Harvard University, as the Executive Director of its International Mind, Brain, Health, and Education Initiative (IMBHEI). The International MBHE Initiative will generate a comprehensive integration of neuroscience, developmental sciences, health, education and related disciplinary research. Its goal is to positively impact optimal achievement in academics and in life for all individuals. IMBHEI will develop best practices for health care clinicians, educators, public health professionals, policy makers, family/caregivers and other stakeholders, based in scientific research. This will be the foundation for creating and building the SJBF data repository of knowledge related to the brain.

"Dr. Peabody's vision in launching this Initiative will put the SJBF in the forefront of the worldwide Mind, Brain, Health and Education movement, with its innovative efforts to connect and reshape education and health, neurosciences and related disciplines to bring together their enormous resources in order to create more effective learning and health interventions," said Donohue. "This will be a critical component in helping us achieve our goal of advancing our knowledge of the brain 50 years in the next 5 years."

"Her practical approach, with its emphasis on producing empirically based and responsive programs and tools that cross traditional disciplinary boundaries, will directly impact the work of the frontline of human development, teaching, learning, wellness, public health and policy makers," Donohue continued. "It will provide practical training and support in applied settings as well as an alternative academic environment for scholars and practitioners desiring training in the sciences and disciplines of mind, brain, health, and education that combines research with practice. A well-supported Mind Brain Health and Education Initiative can generate innovations in education and health and have a pervasive impact on the economy," he added.

Peabody noted, "This Initiative will create a preventative, proactive, and evidence-based approach to education, primary health care delivery, human development, neurodevelopment and well-being for our children and young adults throughout the world."

She continued, "This initiative supports the translation of the research and practice of multiple related sciences to promote direct application at multiple levels and across disciplines. The reach includes undergraduate, masters, and doctoral level programs in education, health, and human sciences, P-16 educators, health care professionals, and parents/caregivers, as well as the learners themselves."

"Through the integration of multiple disciplines we are developing an ambitious and promising, solutions oriented program to bring together education and health care disciplines, integrating practical and scientific foci on academic and wellness outcomes," added Dr. Peabody.

The following experts in the fields of Pediatric Acquired Brain Injury (PABI) and neuroscience were announced as part of the newly formed International Advisory Board and the launch of its Global Initiative:

Dr. Kurt Fischer, Bigelow Professor at Harvard’s School of Graduate Education (HGSE) and Director of the Mind, Brain, and Education (MBE) Program, stated, "Education and medicine should be natural allies. Both of them promote and support the long-term health and well-being of children and adults around the world, historically; however, they have remained separated. It is time for them to join through the MBHE movement to build research-based knowledge that will improve education and health throughout the world. Dr. Peabody has worked extensively with medical institutions, P-12 schools and higher education to create the kinds of alliances that we need for generating strong research related to educational and primary healthcare practice, public health and policy. She makes the perfect leader for joining medicine/biology with education/learning science."

Fischer continued, "Her efforts will enhance our current mission in bringing together the sciences most closely related to education and health/brain science, genetics, cognitive science, emotion science, child development, and pedagogy. In this joining together, scientists and practitioners work together to create usable knowledge that contributes to the healthy development, well-being and achievement of children everywhere. The outcome of this effort has burst forth to become a large, energetic world-wide movement."

Fischer concluded, "This is a proud moment as MBHE joins together with the new initiative on PABI to make life better for children all around the world."

Dr. Jane Gillett, the Medical Director of the Hamilton Health Sciences ABI (Acquired Brain Injury) Program, as well as an Associate Professor at McMaster University in Ontario, Canada, stated, "The Sarah Jane Brain Project's goal of developing a broad system of care spanning from prevention to acute care to long-term community living that is based on current evidence and encouraging research into all aspects of brain injury can only enhance our understanding of the brain while delivering real results to the families who are currently affected." Dr. Gillett is also the creator of the PABICOP model which the National Pediatric Acquired Brain Injury Plan (PABI Plan) was closely modeled after.

Dr. Shayne Ladek, who is the Team Physician for the Canadian Soccer Association and Federation Internationale de Football Association, stated, "We need to enhance our understanding about the long-term impact of concussions and 'mild' traumatic brain injuries on our children and young athletes around the world. Creating an international effort focused on collecting the information and sharing it will undoubtedly lead to much greater advances and knowledge worldwide."

Dr. Vilayanur S. Ramachandran stated, "There is a tremendous need to connect the fractured silos across neuroscience research and clinical practices. The Sarah Jane Brain Project's efforts to be a catalyst as a unifying voice will have considerable impact on increasing our knowledge of the brain. I am excited to be part of this new global initiative." Dr. Ramachandran, a native of India, is a world-renowned neurologist best known for his work in the fields of behavioral neurology and psychophysics. He is currently the Director of the Center for Brain and Cognition, Professor in the Psychology Department and Neurosciences Program at the University of California, San Diego, and Adjunct Professor of Biology at the Salk Institute for Biological Studies.

Nick Rushworth, who is the Executive Officer of Brain Injury Australia, noted, "Uniting families across the globe will benefit all of our children and young adults who suffer from a pediatric acquired brain injury. Brain injuries don't discriminate between a shaken baby in Brisbane or Brooklyn, a motor vehicle incident in Melbourne or Miami or Sydney to Seattle, and neither should our efforts at preventing and treating these injuries."

Dr. Lucia Willandino Braga said, "The underlying principle of The Sarah Jane Brain Project - that of shared knowledge - will benefit the many families, clinicians and researchers across the globe who are working very hard to support these highly traumatized children and young adults." Braga is the President and Dean of the SARAH Network of Rehabilitation Hospitals, located throughout Brazil.

Rounding off the new international appointments to the SJBF Advisory Board is Shaheen Usmani out of Jamia Millia Islamia (a Central University in India).

To learn more, please visit The Sarah Jane Brain Foundation's website, www.TheBrainProject.org.

About MBE:
In the late 1990s this movement began in three separate places: Cambridge, Paris, and Tokyo (Harvard Graduate School of Education in Cambridge, the Organization for Economic Cooperation and Development (OECD) in Paris, and the Initiative in Neuroscience and Education in Tokyo [also called Baby Science]). Kurt Fischer, Bigelow Professor at Harvard and Director of the Mind, Brain, and Education (MBE) Program there, led the connection of these three centers (and others) to form an international movement. This effort was catalyzed by the Pontifical Academy of Sciences (the first scientific academy in the world, founded in 1603 by Galileo and others), which invited Fischer and other MBE leaders to create a program on MBE in Rome to celebrate the 400th anniversary of the Academy.

In 2004 they founded the International Mind, Brain, and Education Society (IMBES) and went on to found the new journal Mind, Brain, and Education (named as the Best New Journal by the American Association of Publishers). They seek ways of catalyzing the joining of biology, cognitive science, and education in order to craft and renew education for the twenty-first century.

The National PABI grand finale Heroes Tour in New York City November 17, 2009 "Thank you"

2009-11-19T18:32:00.001-05:00

As a Survivor of a Traumatic Brain Injury it gives me great pleasure in saying (Thank you) to everyone for coming out to the National PABI grand finale Heroes Tour in New York City November 17, 2009 I also want to say thank you for helping with The goal and mission of the Sarah Jane Brain Foundations National PABI plan that is so important. This program is sorely needed, and it will help thousands of children and their families overcome the difficulties following a Traumatic Brain Injury (TBI). It will also help raise awareness of TBI and help the thousands of other American young adults who yearly suffer a PABI as result of accidents, falls, strokes, or by other means. And it will help protect the children of tomorrow from ever having to experience the horror and heartache of PABI. This coupled with the growing awareness that thousands of our troops returning from Iraq and Afghanistan too are suffering from TBI. This injury is being called the signature wound of these conflicts. For myself, I wish on that July afternoon 21 years ago, that there was a national PABI plan in place. I wish that the States, 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.

Sincerely, "Thank you"

Craig Sears
A Voice for Traumatic Brain Injury

You're invited, Come join us help make the difference in a traumatic brain injury survivors life

2009-11-09T18:23:00.003-05:00

The PABI Heroes event/Angel Awards ceremony will be held in NYC on Tuesday, November 17th

From 10am-2pm there will be a competition in the studio of Webster Hall (125 E 11th Street NYC 10003). All 11 bands will perform to determine the winner.

From 6pm-8pm in the Main Ballroom at Webster Hall there will be the Angel Awards Ceremony and the top three bands will perform.

From 8pm-10pm there will be a private dinner and dialogue in another room at. Location: Webster Hall
Street: 125 E. 11th St.
City/Town: New York, NY

From 8pm-12am there will be an after party in the Main Ballroom where all bands will get a chance to perform

All my best, Jen Glaser Director of Special Events Sarah Jane Brain Project 339 Fifth Ave. - Suite 405 Office: (212) 576-1180 www.TheBrainProject.org

Those with TBI need their voices heard.

2009-11-09T18:21:00.008-05:00

My name is Craig Sears I am a survivor of Traumatic Brain Injury (TBI) from a motorcycle accident over 20 years ago. Due to my injury I have memory problems, speech problems, balance issues and many other things. I am disabled because of this and receive services from the state which enable me to remain in the community instead of in a nursing home, in prison or on the streets.

However, three months ago, the State of Connecticut wrongly took away those services, for no reason and without notice. Fortunately I am a strong advocate for myself and after many phone calls, including to my Congressman's office, I was able to have them reinstate my services – but not without cost to me as I went for so long without getting the services I needed. It also brought to my attention the sad state of the system as it
currently exists - it is designed to take advantage of people with disabilities. Another person with a TBI in my shoes would likely not have had the ability to advocate for themselves as I did, and without services they would not have anybody else willing to do it on their behalf. This is a very disturbing situation and it shows how easy it is for states to discriminate against and take advantage of someone like me - it's like
taking candy from a baby!

There is a national organization called the Sarah Jane Brain Foundation whose Advisory Board wrote a national plan (the National Pediatric Acquired Brain Injury Plan) which would help in situations such as mine. The plan calls for the development of 52 State Lead Centers of Excellence which would, among other things, have case managers specially trained to assist children and young adults with brain injuries. If the National PABI Plan was in place, that case manager would have stepped in during my crisis and been my advocate. These people would be trained to help those who cannot help themselves. Imagine what would have happened to someone else in my same shoes who did not know to contact the people that I contacted to get my services back! They would have not gotten them reinstated and would have ended up on the streets or in prison or dead, that's what.

That's why the goal and mission of the Sarah Jane Brain Foundation are so very important. For myself, I wish on that July afternoon 21 years ago 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.

Sincerely,Craig Sears, a voice for Traumatic Brain Injury

This is clip #1 of an extended interview with Patrick Donohue & Jennipher Dickens of the Sarah Jane Brain Foundation, and TBI advocate Craig Sears

2009-09-19T10:21:00.002-04:00

This is clip #1 of an extended interview with Patrick Donohue & Jennipher Dickens of the Sarah Jane Brain Foundation, and TBI advocate Craig Sears, with Gabor Kautzner, on "The Sandbox Chronicles"....

For myself, I wish on that July afternoon 21 years, that there was a national PABI plan in place. I wish that the 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.

To President Barak Obama and our leaders and lawmakers, I plead with
you to put the Sarah Jane Brain Project's national PABI plan in place so others don’t have to go through what I am/have. This is cruel and unusual punishment because I/they have a disability called PABI/PTBI.

Response from the White House

2009-09-15T00:27:00.006-04:00

I started the year by writing President Barack Obama about the importance of the mission of the Sarah Jane Brain Foundation. Since his inauguration in January, I've sent out several letters to the White House, looking for some kind of response. Well, now I've got it.

Here is the letter below. (Click on letter to see it full size)

From Craig Sears

Grant proposal seeks nearly $1 Billion for TBI

2009-08-30T22:27:00.007-04:00

After struggling for over 20 years to fight and scratch for recognition, and the help I needed, this news is like a dream come true. This money, IF it comes through, can help a lot of people, and make a tremendous difference in the lives of a lot of people recovering from TBI. I can only imagine what it could have done for me.-CS

*****
930 million grant proposal announced
FOR IMMEDIATE RELEASE
August 18, 2009 Contact: Jennipher Dickens, Communications Director, The Sarah Jane Brain Foundation
(212) 201-0599 or Jennipher@TheBrainProject.org

$930 million grant proposal announced
Largest grant proposal in history for pediatric brain injury

NEW YORK, NY - An organization whose goal is to implement a national model system for young people with brain injuries announced today it had submitted the largest grant proposal in history dealing with the number one cause of death and disability for children and young adults in the United States.

The Sarah Jane Brain Foundation (SJBF), in conjunction with its 52 State Lead Centers of Excellence (one in every state plus D.C. and Puerto Rico), submitted a $930 million multi-Department grant proposal today, requesting to utilize stimulus funds to implement its National Pediatric Acquired Brain Injury (PABI) Plan across the country. The entire grant proposal to the Departments of Health and Human Services, Education, Veterans Affairs, Transportation and Justice can be viewed from the website www.TheBrainProject.org .

The National PABI Plan, a 104-page document that outlines the entire continuum of care for children and young adults with brain injuries, was created in January by the National Advisory Board of the SJBF. The National Advisory Board of the SJBF currently consists of over 100 of the top pediatric neurologists and rehabilitation experts from all over the country.

The SJBF is one of the largest organizations in the country dealing with pediatric brain injury. It was founded in October 2007 by Patrick Donohue, whose now 4-year-old daughter Sarah Jane was shaken by her baby nurse when she was five days old, causing a severe brain injury.

The organization purposely submitted its proposal on August 18 due to the significance of the day. Donohue noted, "Today is the birthday of Marilyn Spivack, the Honorary Chairwoman of our National Advisory Board and the mother of brain injury advocacy. It is in her honor that we submit this grant proposal today, with the hope that it will also forevermore be the 'birthday' of better care for children and young adults with brain injuries."

Spivack, whose daughter sustained a traumatic brain injury in a car accident more than 30 years ago, founded the Brain Injury Association of America in 1980.

The 52 State Lead Centers of Excellence will work together as well as with other institutions in their states and around the country to implement the PABI Plan, coordinating with others to ensure a seamless system of care.

These institutions consist of many top-rated children's hospitals, research universities and health advocacy organizations staffed by the best pediatric neurologists and rehabilitation experts in the country (for full list see press release dated June 5 here.

When fully implemented across the country, the National PABI Plan will create over 6,000 new jobs across all 50 states.

Below are comments from various U.S. Senators and Representatives on their support of the National PABI Plan, the 52 State Lead Centers of Excellence, and the Sarah Jane Brain Project in general.

"Each year, over 1 million American children suffer from some form of Pediatric Traumatic Brain Injury (PTBI). Sadly, too many times, such injuries lead to the premature loss of a child's life or a life-long disability. There is an immense need for more research to be conducted on the human brain, so the important work and information sharing facilitated by The Sarah Jane Brain Project benefits children and their families greatly. I am proud of the leadership and work that Oklahoma State University's Center for Health Science has provided within the state to address the issue of pediatric brain injury." - U.S. Sen. Jim Inhofe (R-OK)

"Thousands of children with traumatic brain injuries will be treated and millions more will be protected from brain injuries as a result of this investment. The Sarah Jane Brain Project has done an incredible job of helping children and partnering with the Children's Hospital Boston/Harvard Medical Center will help them advance their efforts even further. We owe the Donohue Family a huge debt of gratitude for having the strength to turn a heartbreaking personal experience into something that has helped so many," - U.S. Sen. John Kerry (D-MA)

"I'm pleased the University of Texas at Dallas for Brain Health has been selected to receive this important funding. The organization's efforts to combat pediatric brain injury continue to serve as an example for Texas. This grant will help them continue with their excellent research and advancements in the future." - U.S. Sen. John Cornyn (R-TX)

"Pediatric Acquired Brain Injury changed your life, as it changed your entire family's life, and yet you have persisted in your goal. I greatly admire your fortitude, your determination and your will to persevere. You have successfully rallied to make a difference in the lives of many people and we thank you for that. I wish you and The Sarah Jane Brain Foundation all the best as you pursue this important work." - U.S. Sen. Joseph Lieberman (D-CT), in a letter of support addressed to Patrick Donohue

"The Louisiana Health Care Quality Forum being selected as a State Lead Center is an integral first step in developing a seamless, standardized, evidence-based system of care for all children affected by Pediatric Acquired Brain Injury. With PABI known to be the leading cause of death and disability among our nation's children, I look forward to working with the Forum to both prevent these devastating injuries and to improve the lives of those families who are affected by them." - U.S. Sen. Mary Landrieu (D-LA)

"As the leading cause of death and disability for our children, pediatric acquired brain injury impacts not just those specific families but all of us, and we look forward to working with you to both prevent these devastating injuries and to improve the lives of those families who experience them." - U.S. Congressman Patrick Kennedy (D-RI) in a letter of support to Patrick Donohue and Hasbro Children's Hospital

"The Sarah Jane Brain Foundation is working with leading institutions from across the country to provide critical resources to families affected by Pediatric Acquired Brain Injury (PABI), and to collaborate with those families and institutions to improve research. I support this grant proposal because it would implement the National Pediatric Acquired Brain Injury Plan and improve the lives of children and young adults suffering from PABI." - Congresswoman Carol Shea-Porter (D-NH)

To read the National PABI Plan in its entirety or to watch a video presentation on the plan, visit the SJBF website at www.TheBrainProject.org
*****

Prayers for Sarah Jane

2009-07-20T21:07:00.007-04:00

Please say a prayer for Sarah Jane. INSTRUCTIONS FOR SPECIAL WORLDWIDE NOVENA: Beginning on Sunday, July 19 and continuing for nine consecutive days (through Monday, July 27) at 12 noon (EST) each day, please recite the following: 1 – Novena: “Blessed Teresa of Calcutta, you allowed the thirsting love of Jesus on the Cross to become a living flame within you, and so became the light of His love to all. Obtain from the Heart of Jesus to heal and habilitate Sarah Jane Donohue. Teach me to allow Jesus to penetrate and possess my whole being so completely that my life, too, may radiate His light and love to others. Amen. Immaculate Heart of Mary, Cause of Our Joy, pray for me. Blessed Teresa of Calcutta, pray for me.” 2 – The Lord’s Prayer: “Our Father, Who art in heaven, hallowed be Thy name; Thy Kingdom come, Thy will be done on earth as it is in Heaven. Give us this day our daily bread; and forgive us our trespasses as we forgive those who trespass against us; and lead us not into temptation, but deliver us from evil. Amen.” 3 – The Hail Mary: “Hail Mary, Full of Grace, The Lord is with thee. Blessed art thou among women, and blessed is the fruit of thy womb, Jesus. Holy Mary, Mother of God, pray for us sinners now, and at the hour of death. Amen.” 4 – Glory be to the Father: “Glory be to the Father, and to the Son, and to the Holy Spirit. As it was in the beginning, is now, and ever shall be, world without end. Amen.” ##### The mission of the Sarah Jane Brain Foundation is to create a seamless, standardized, evidence-based system of care, universally accessible for all children and young adults suffering from pediatric acquired brain injury (PABI) and their families, regardless of where they live in the United States. PABI is a brain injury sustained from traumatic or non-traumatic causes from birth to age 25 (since the pediatric brain doesn’t finish developing until 25 years of age). Traumatic causes can include motor vehicle accidents, falls, blast injuries from war, assaults/child abuse, sports concussions, gunshot wounds, or being struck by an object. Non-traumatic causes include strokes, brain tumors, meningitis, poisoning, insufficient oxygen, ischemia, pediatric AIDS and substance abuse.

Mr. Sears goes to Washington

2009-04-04T19:00:00.016-04:00

March was Brain Injury Awareness month, and what a busy month it was. Craig Sears, A Voice for Traumatic Brain Injury took his lobbying efforts to the Connecticut State Capitol on March 12th, and then to Washington, DC on March 25th.

From Drop Box

In Hartford, Craig participated in the rally organized by CACIL, the Connecticut Association of Centers for Independent Living, to support continued funding for Connecticut's Independent Living Centers. Craig met with local legislators including Connecticut State Representative Peggy Reeves, (D-Wilton)pictured here below.

From Drop Box

The big event of the month however came on the 25th when Craig went to Washington, DC on behalf of the Sarah Jane Brain Foundation to take part in the Congressional Brain Injury Task Force Awareness Day. The visit was part of a day long informational session held at the Capital. Advocates from several groups used the occasion to lobby on behalf of the Pediatric Acquired Brain Injury (PABI) Plan.
Patrick Donohue, Sarah Jane's father, introduced Craig as Sarah Jane's "biggest advocate".

From Drop Box

(Above)Here is Craig with Sarah Jane and her father Patrick. Patrick and Craig met with several Congressional Representatives, including Congressman Patrick Kennedy of Rhode Island (below).

From Drop Box

Look for more from Craig and the Sarah Jane Brain Project in the coming weeks.

Craig Sears named to Brain Project Board

2009-03-09T18:58:00.004-04:00

In recognition of his years of TBI advocacy efforts, The Sarah Jane Brain Project has named Craig Sears to the Family Committee of it's national Advisory Board. "This is a blessing to me. It gives meaning to my many years of struggle", Sears says. "I was told by a lot of good people that I was kept around for a reason. Maybe this is it."
The lives of all the Family Committee members have been directly touched by Pediatric Acquired Brain Injuries (PABI). They are either PABI survivors like Craig, or parents of children injured or killed by a brain injury. Their combined experiences are helping to shape the Projects message, goals and policies.

Craig Sears' TBI struggle spotlighted

2009-02-22T15:12:00.006-05:00

The Sarah Jane Brain Project has spotlighted TBI advocate Craig Sears in a recent national communication.

On Thursday February 19th, Jennipher Dickens, Communications Director for the group, wrote, "If you are wondering why we are devoting day and night at The Sarah Jane Brain Foundation to help children and young adults who suffer from the #1 leading cause of death and disability, please take a few minutes and read the story of a young Connecticut man named Craig Sears...". The message then continues with Craig's 20 year struggle with TBI and against discrimination.

The Sarah Jane Brain Project also recognized and thanked Craig for his involvement with TBI awareness and education, his endorsement of the PABI Plan, and his willingness to serve on the groups National Advisory Board. "Your advocacy efforts and personal experience make a great addition to our team," Dickens wrote.