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.
The Sarah Jane Brain FOUNDATION
339 Fifth Avenue – Suite 405
New York, NY 10016
Patrick B. Donohue, Esq., Founder
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.