Acquired Brain Injury Network Of Pennsylvania, Inc.

"Empowering Survivors and Family Members to Rebuild Their Lives."
History


NEWS ITEMS - click to read

2013.03.15 Governor's proposed budget will re-open the COMMCARE and OBRA Waivers - apply now!
2010.05.01 ABIN-PA Leadership Training for Survivors and Family Members
2009.06.05 ABIN-PA Receives 2009 Inglis Award for Continuing Excellence
Brain Injury School Re-entry Program team leaders and their contact information
2008.04.28 Brain Injury Recovery Task Force
2007.10.15 Shaken Baby Syndrome Grant to PSU
2007.10.11 Brain Regeneration Verified in Animal Study
2007.02.12 DOD & VA Joint HBOT Proposal for Veterans
2004 to 2005 A 23% Rise in PA Motorcycle Deaths
2006.09.08 Mental Activity Seen in Gravely Injured Brain
2006.08.31 GOHCR TBI DVD Final Editing Meetings
2006.08.25 HCBS SPT Approves Brain Injury Recovery Blueprint
2006.08.13 Georgia Medicaid Case - SPECT Scan Validates Hyperbaric Oxygen Therapy for Pediatric Brain Injury
2006.07.27 Self-Advocates Comment on Direct Careworker Training>


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2013.03.13 Governor's Budget to Benefit Brain Injury

The line item "Services to People with Disabilities" in the Governor's proposed budget contains an $15,758,000 increase for the COMMCARE, OBRA, and Independence Waivers. This increase will be used for the waiting lists (COMMCARE and OBRA) and for the expansion of all three waivers on a first come, first served basis. Everyone who has been thinking about applying for these waivers must do it now - because these spaces are first come, first served. Please share this information widely, with all your contacts

In addition, for these waivers to re-open and expand, your senator and representative must pass the Governor's line item for this increase - "Services for Persons with Disabilities". Contact your senator and representative and ask for their support - explain how important this is to you.


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2010.05.01 Leadership Training for Survivors and Family Members

ABIN-PA held Leadership Training for Survivors and Family Members in Philadelphia on April 17, Pittsburgh on April 24 and Camp Hill on May 8 with support from the the Inglis Foundation and the Disability Rights Network.


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2009.06.05 Acquired Brain Injury Network of PA Receives 2009 Inglis Award for Continuing Excellence

The Acquired Brain Injury Network of Pennsylvania, Inc., received a 2009 Inglis Award for Continuing Excellence. The Inglis Foundation awards program honors non-profit organizations in the Philadelphia region that enhance the quality of life for people with physical disabilities, and by doing so support the Inglis mission.

The award winning programs will be honored on June 25, 2009, at a ceremony at Inglis House, Philadelphia, PA. Laura Schwanger, Chairman of the Awards Review Committee, commented, “The Awards were created so programs like Acquired Brain Injury Network of Pennsylvania – with a real vision for improving the lives of people with physical disabilities – can expand their efforts.”

The Inglis Foundation works with people with physical disabilities to create and provide practical solutions so they may live their life to the fullest. All of Inglis’ services and programs are designed to enable people with physical disabilities to enjoy life with the greatest amount of independence and mobility. For more information, visit the organization’s website: www.inglis.org.

Click Here  to see a summary of our accomplishments using this award!


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Brain Injury School Re-entry Program team leaders and their contact information.

Click on the link above for information on your area. The Brain S.T.E.P.S. program is helping schools prepare for and serve children returning to school after brain injury. This program is managed by the Brain Injury Association of Pennsylvania under the Departments of Health & Education through a federal Maternal & Child Health Grant and volunteers throughout the state.


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2008.04.28 Brain Injury Recovery Task Force

The Brain Injury Recovery Task Force Meeting in Harrisburg drew 150 survivors, family members, providers, state employees, professionals, and friends. Input from the meeting resulted in 8 work groups that met by toll-free teleconferencing to plan the work of the Department of Public Welfare Brain Injury Initiative. A report will be published in the near future. For information, contact Ginny Rogers at virrogers@state.pa.us.  


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2007.10.15 Shaken Baby Syndrome Grant to PSU 

Monday, October 15, 2007

Hershey, Pa. -- A program to educate parents and other caregivers of children of the dangers of abusive head trauma got a major boost in central Pennsylvania recently thanks to a $2.8 million grant from the Centers for Disease Control (CDC) and the continued efforts of a Penn State Milton S. Hershey Medical Center team of medical professionals.

Mark Dias, a pediatric neurosurgeon, leads the Penn State team, implementing an education and awareness campaign in Pennsylvania to prevent Shaken Baby Syndrome, a cause of severe brain damage or death for hundreds of children each year. Dias started the program in 1998 in upstate New York. His program has reduced cases of Shaken Baby Syndrome in that state by more than 50 percent since it began almost nine years ago. Early indicators show his program's success in Pennsylvania could make it a national model for other states.

On Monday, Dias and his team, representatives from the state Department of Health, and the parents of a child who was a victim of Shaken Baby Syndrome came together at Penn State Hershey Medical Center for the announcement of the recent grant award from the CDC. The Medical Center's program is one of just two in the nation to receive CDC support for education and preparedness of this disorder.

"We are so pleased that the CDC, by awarding this money to our program, has recognized that abusive head trauma in young children is a problem that can be addressed by programs such as ours," Dias said. "This grant award lets us expand our program, measure its successes and costs, and continue helping to reduce the number of baby shaking cases we see all too often."

Dias started the Pennsylvania program as a pilot study in 2002, following on the success in New York. That year, the state passed The Shaken Baby Syndrome Education Act. With initial funding from the Pennsylvania Commission on Crime and Delinquency and subsequently from the state Department of Health, nurse educators provided training and prevention materials to staff of the state's 118 birthing and children's hospitals.

Since May 2006, all new parents giving birth at these institutions received information about preventing Shaken Baby Syndrome. More than 90 percent of those parents participated in Dias' program by signing a statement of commitment acknowledging receipt of the educational materials.

The CDC grant will allow Dias' program to enter a new phase. Nurse educators will begin training staff at physicians' offices that provide pediatric care in 16 counties in central Pennsylvania -- 15 other counties in the region were randomly selected to not receive this training or materials -- and provide materials to be presented to parents at two-, four- and six-month immunization visits. The team will then compare participation rates among the counties as well as compare data on abusive head trauma cases reported in those counties.

The study should indicate whether the education and prevention materials help reduce incidence rates, as it has in New York, and also allow them to estimate costs for implementing the program in a community.

Shaken Baby Syndrome occurs when an adult shakes an infant or young child, typically in response to frustration over the child crying. Since babies' heads are large in comparison to their underdeveloped neck muscles, the shaking causes their heads to whip back and forth, allowing the brain to repeatedly strike the inside of the skull. Blood vessels are damaged, and bleeding and swelling follow, which cause the long-term neurological damage or death of the child.

Nationwide, between 1,000 and 3,000 children become victims of Shaken Baby Syndrome each year; about 25 percent die from their injuries.

Contact Megan Manlove mmanlove@hmc.psu.edu 1-717-531-8604


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2007.10.11 Brain Regeneration Verified in Animal Study  

1st successful treatment for chronic TBI

New Orleans, LA ĘC A research team led by Dr. Paul Harch, Assistant Professor of Clinical Medicine at Louisiana State University Health Sciences Center New Orleans and Director of the LSU Hyperbaric Medicine Fellowship Program, has published findings that show hyperbaric oxygen therapy (HBOT) improved spatial learning and memory in a model of chronic traumatic brain injury. HBOT is the use of greater than atmospheric pressure oxygen as a pharmacologic treatment of basic disease processes/states and their diseases. The paper is reported in the October 12, 2007 issue of Brain Research. (Paper available upon request.)

The research team adapted a well-known acute animal model of focal traumatic brain injury to chronic brain injury to evaluate the ability of low-pressure hyperbaric oxygen therapy (HBOT) to improve behavioral and neurobiological outcomes. The 64 rat subjects were divided into three groupsĘC an untreated control group (22), an HBOT group treated with a human protocol (19), and a group treated with sham hyperbaric pressurization(23).

The subjects were tested pre and then 31-33 days post HBOT using the Morris Water Task ( MWT), a behavioral test which measures learning and memory. The HBOT group received low pressure twice daily therapy, and the sham-treated normobaric air group the identical schedule of air treatments using a sham hyperbaric pressurization. All groups were subsequently retested in the MWT. Post experiment, blood pressure density was measured in the brain and was correlated with MWT performance. HBOT caused an increase in vascular density in the injured hippoca mpus (p < 0.001) and an associated improvement in spatial learning (p < 0.001) compared to the control groups. The increased vascular density and improved MWT in the HBOT group were highly correlated (p < 0.001). In conclusion, a 40-day series of 80 low pressure HBOTs caused an increase in vascular density and an associated improvement in cognitive function. These findings reaffirm the clinical experience of HBOT-treated patients with chronic traumatic brain injury and write the authors, represent the first demonstration of noninvasive improvement of chronic brain injury in an animal model.

Traumatic brain injury (TBI) is a disorder of major public health significance. According to the National Institutes of Health, each year in the United States alone there are 100 new cases/100,000 population and 52,000 deaths. Most patients survive and add to an increasing prevalence of chronic TBI, estimated at 2.5ĘC6.5 million individuals in 1998. Direct and indirect costs have been estimated at $56 billion/year in 1995. Unfortunately, there is no cure for chronic TBI and only a few previous studies suggest effectiveness under limited conditions.

These new findings could hold enormous significance not only for the million+ who sustain TBI from falls, motor vehicle accidents and assaults in this country each year, but also for returning US military veterans.


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2007.02.12 DOD & VA Joint HBOT Proposal for Veterans

Proposal

Department of Defense Brain Injury Rescue & Rehabilitation Project (DoD-BIRR)
 

Experimental Study of Hyperbaric Oxygen Therapy in the Treatment of Residual Effects of Traumatic Brain Injury in United States Military Iraqi War Veterans

Paul G. Harch, M.D., LSU School of Medicine, New Orleans

February 12, 2007

INTRODUCTION:  The current military conflict in Iraq has resulted in a very high proportion of traumatic brain injuries due to body armor and the types of munitions that are generating casualties.   Statistics suggest as high as 80% of injured surviving veterans suffer from the residual neurological and cognitive effects of traumatic brain injury.  There is no accepted effective treatment for these chronic effects.  In the past 30 years an increasing body of scientific literature has suggested that this condition is treatable with low pressure hyperbaric oxygen therapy (HBOT).  Recently, HBOT has been shown to improve cognitive function and improve vascular density in an animal model of chronic traumatic brain injury (Harch, 2001; manuscript submitted).  This is the first such demonstration in the history of science and reinforces the clinical reports of effectiveness of HBOT.

PURPOSE:  To conduct a rigorous study of HBOT in United States Military Iraqi war veterans with chronic traumatic brain injury and test the ability of HBOT to improve neurological, cognitive, emotional, and behavioral function.

DESIGN:  Multi-center randomized prospective controlled crossover trial.  All veterans enrolled in the study will receive both HBOT and participate as a control subject.

METHODS:  The study will recruit 400 U.S. military Iraqi war veterans who have sustained a remote traumatic brain injury and are having cognitive and neurological dysfunction 12 months after their injury.  Subjects will be identified by their VA or private physicians, enrolled in the study, and complete a neuropsychological test battery.  If the neuropsychological test battery is positive for cognitive deficits the patient will undergo a neurological physical exam and randomization to HBOT or no HBOT.  All veterans will complete a series of Quality of Life questionnaires and discontinue any other therapies.  A subset of the veterans will also undergo the sequence of SPECT brain blood flow imaging, followed by a single HBOT or sham pressurization and then repeat SPECT at centers equipped to do SPECT.  The HBOT group will receive 1.5ATA/60 minute HBOT's twice/day, 5 days/week for 40 treatments.  The control group will not receive HBOT.  One month after the 40th HBOT both the HBOT and control groups will have a repeat neuropsychological test battery, answer the QOL questionnaires, and the subset with SPECT will have repeat SPECT brain blood flow imaging.

The two groups will then crossover:  the HBOT group will become the control group and the control group will receive HBOT.  One month after the 40th HBOT to the previous control group both groups will have repeat neuropsychological testing, QOL questionnaires, and the SPECT subset will have repeat SPECT brain imaging.  Both groups will be followed for an additional six months at which time neuropsychological function, QOL, and return to work or previous level of function will be assessed.  In addition, the SPECT subset will receive a final SPECT brain scan.

ANALYSIS:  The neuropsychological and QOL data will be statistically analyzed by comparing pre/post test score differences for individuals as they complete each arm of the study.  In addition, HBOT and control groups will be compared.  SPECT brain imaging will be analyzed by standard methods, including region analysis and statistical parametric mapping.  Study results will be published and announced.

COST/TIME ESTIMATES:  Each veteran will take one year to complete the study.  Total cost is approximately $25,000/veteran. 


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2004 to 2005 A 23% Rise in PA Motorcycle Deaths

There was a 23 percent increase in deaths from motorcycle crashes in Pennsylvania last year. Compared to 158 deaths in 2004, there were 205 in 2005, or 47 additional deaths. 

Looking at all motor vehicle deaths in Pennsylvania, 1,490 died in 2004 and 1,616 in 2005. This represents an increase of 126 deaths or 8.5 percent. The 47 additional motorcycle deaths in 2005 represent 37 percent of the over-all increase. 


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2006.09.08 Mental Activity Seen in Gravely Injured Brain

In the September 8, 2006, edition of the new York Times, Benedict Carey reported on a severely brain-damaged English woman in an unresponsive, vegetative state who "showed clear signs on brain imaging tests that she was aware of herself and her surroundings."

These findings "could have far-reaching consequences for how unconscious patients are cared for and how their conditions are diagnosed."

"In response to commands, the patient's brain flared with activity, lighting the same language and movement-planning regions that are active when healthy people hear the commands. Previous studies had found similar activity in partly conscious patients, who occasionally respond to commands, but never before in someone who was totally unresponsive."

The meaning of this finding is unknown, "Yet the study so drastically contradicted the woman's diagnosed condition that it exposed the limitations of standard methods of bedside diagnosis. And its findings are bound to raise hopes for tens of thousands of families caring for unresponsive, brain-damaged patients around the world - whether those hopes are justified or not, experts said."

At the very least, Dr. James Bernat, a professor of neurology at the Dartmouth Medical School, urged that "...we should always talk to them, always explain what's going on, always make them comfortable, because maybe they are there, inside, aware of everything."

In this situation, the functional M.R.I. scan of this unresponsive woman five months post car accident showed that her processing was normal, compared to the other 12 volunteers who were tested.

More recently, 11 months post injury, Dr. Steven Laureys said that the patient "tracked with her eyes a small mirror, as it was moved slowly to her right, and could fixate on objects for more than five seconds".............meaning she is now in the "sometimes responsive condition known as a minimally conscious state", along with an estimated 100,000 Americans. 

Emergence from an unresponsive state depends on the type of injury and how long the person has been unresponsive. Traumatic brain injuries sever some neurons but leave many intact, so 50 percent become more aware in the first year, but very few afterwards. In contrast, oxygen starvation causes massive damage, so only 15 percent become more aware in the first three months, but very few afterwards, and none after two years.

Large numbers of unconscious people must be studied to determine the meaning of this discovery.


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2006.08.31 GOHCR TBI DVD FINAL EDITING MEETINGS

10,000 copies of the new training DVD on traumatic brain injury will soon be ready for free distribution by the state. This DVD was funded by the Governor's Office of Health Care Reform and produced by Leonard Lies of Dreamcatchers.

Heidi Adams of the Governor's Office of Health Care Reform is now traveling around the state to collect final comments.  She brought the DVD to the home of Barb and John Dively in Lansdale yesterday, 8/31/06, where survivors and family members were able to discuss the DVD and enjoy snacks and lunch.  

Thanks to Corinne Gries, Debbie McDevitt, Joe Neve, Maureen Neve, Pat Strenk, and Marcia Williams for coming to the meeting and offering their comments ...........and thanks to all who shared their lives on film!


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2006.08.25 DPW HCBS SPT APPROVES BRAIN INJURY RECOVERY BLUEPRINT

The Brain Injury Recovery Blueprint was approved by the Home & Community Based Services Stakeholder Planning Team of the Department of Public Welfare on Friday, August 25, 2006.

These recommendations of the HCBS SPT Brain Injury Work Group were presented by Barbara Dively (HCBS SPT, HCBS SPT BIWG, ABIN-PA) with the help of Cheryl Dougan (HCBS SPT, HCBS SPT BIWG, BIAPA), Jackie Culbertson (Neighbours, Inc., Supports Broker), Debbie Robinson (Speaking for Ourselves), Josephine Thompson (Supports Broker), and Sandi Cooper (Supports Broker).

Other advocates who showed the support of the brain injury community by being present at this meeting included Ed Crinnion (substituting for Appointee John Pistorius, both of the Pittsburgh Area Brain Injury Alliance),  Joseph and Maureen Neve (Philadelphia area) and Joanne Finegan (ReMed, Paoli)


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2006.08.13 GEORGIA MEDICAID CASE - SPECT SCAN VALIDATES HYPERBARIC OXYGEN THERAPY FOR PEDIATRIC BRAIN INJURY

(Note: Click on EDUCATION or join the Yahoo group "Medicaid for HBOT" to access files.)

----- Original Message -----
From: David Freels
Sent: Sunday, August 13, 2006 8:12 AM
Subject: Georgia Medicaid loses HBOT case

After a lengthy 7-year fight for reimbursement of HBOT for pediatric brain-injury, through a court order, Georgia Medicaid must now reimburse. Despite refusal to publish the data on HBOT efficacy by numerous peer-reviewed medical journals, it's now been proven in a court of law that HBOT is "necessary to correct or ameliorate" brain-injury as evidenced by (1) the Collet study, (2) observed clinical improvements, and (3) before/after SPECT-scan imaging.

The decision appropriately came on Wednesday August 9, 2006, the 61st anniversary of the atomic bomb drop on Nagasaki--for an explosion of legal requirements of similar proportions has now landed on 2 Peachtree Street in Atlanta, Georgia. This decision is expected to also directly impact the business of Pediatric Neurology itself where malpractice decisions will follow continued denial of HBOT. The Undersea and Hyperbaric Medical Society (UHMS) will also be forced to acknowledge HBOT efficacy for brain-injury or lose whatever remaining credibility they still have.

This legal victory for every special-needs child would have been impossible were it not for the in-person expert witness testimony of three internationally-recognized experts on the use of HBOT for cerebral palsy: Dr Paul Harch of New Orleans, Dr. Pierre Marois of Canada, and radiologist Dr. Michael Uszler of California who testified on the use of SPECT-scan imaging to determine functional brain improvements in CP children via Hyperbaric Oxygen Therapy.

Because the Administrative Law Judge ordered direct testimony be provided in written form, this sworn testimony can now be used by other children in other states by way of the MedicaidforHBOT listserv (http://groups.yahoo.com/group/medicaidforhbot/). In addition, so as to prepare parents and attorneys in other states--as ludicrous as it is--the sworn testimony of three pediatric neurologists will also be freely available to all MedicaidforHBOT members. This testimony and the legal decision itself will be available at http://groups.yahoo.com/group/medicaidforhbot/files/ within the next few days.

From the decision:
______________________

"Three child neurologists supported Respondent's [Georgia Medicaid] position. A specialist in pediatric Physical Medicine and Rehabilitation [Dr Pierre Marois], a specialist in emergency medicine and HBOT [Dr Paul Harch], and a specialist in Nuclear Medicine [Dr Michael Uszler] supported Petitioner's side [Jimmy Freels]. Weighing the evidence presented, Petitioner's arguments are more cross-disciplinary and persuasive than those presented by Respondent. Given that the standard is "corrective or ameliorative," there is a preponderance of the evidence that the HBOT treatments were necessary to correct or ameliorate Petitioner's physical condition."

Decision

Respondent's denial of Petitioner's request for reimbursement of HBOT treatment is REVERSED and the Respondent is hereby ORDERED to honor the Petitioner's request for reimbursement for HBOT.

SO ORDERED, this 9th day of August 2006.

Steven W. Teate
Administrative Law Judge
______________________
David Freels, 2948 Windfield Circle, Tucker, GA 30084-6714
770-491-6776 (phone), 404-725-4520 (cell), 815-366-7962 (fax)
mailto:dfreels@mindspring.com, http://groups.yahoo.com/group/medicaidforhbot/.


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2006.07.27 SELF-ADVOCATES COMMENT ON DIRECT CAREWORKER TRAINING

On Thursday, July 27, 2006, at 1:00 PM, Self and Family Advocates met with Mark Davis of the Paraprofessional Healthcare Institute, MossRehab professionals, and state representatives to determine core competencies for Direct Careworkers serving individuals affected by brain injury.

Self and Family Advocates agreed that listening skills, patience, problem solving, and a calm approach are very helpful qualities in direct careworkers who assist persons affected by brain injury. Some training in the basics of brain injury would eliminate a lot of confusion and misinterpretation of behaviors. Specific training for the needs of the individual would be very helpful - such as wheelchair maintainence, assisted communication, swallowing difficulties. And, extra time needs to be provided in the beginning for a relationship to develop.

Self and Family Advocates identified difficulties including exhaustion in workers with second jobs, lack of reliable transportation for worker, lack of notification to client that a back-up will be needed, inappropriate behavior, absence of any training requirements, rapid turnover of direct careworkers, etc.

MossRehab professionals explained what is done at MossRehab to prepare patients and direct careworkers to transition home and described the needs they have observed. State regulations and practices were explained by Heidi Adams, Governor's Office of Health Care Reform.

Those who attended and helped make the meeting a great success were:  Heidi Adams, Governor's Office for Health Care Reform; Mark Davis, Paraprofessional Healthcare Institute; Advocates - Yolanda Valdes, Raymond Torres, Maureen Neve, Joseph Neve, Dan Rohrback, Jr., Barbara Dively, Dan Rohrback, Jr.; MossRehab Alumni Council - for arrangements with MossRehab; Julie Hensler-Cullen, MSN, RN, Director of Education and Quality, MossRehab, for arranging lunch; MossRehab, Philadelphia, PA, for providing the meeting room and lunch; Rich Gladstone, Department of Public Welfare; Dr. Madeline DiPasquale, neuropsychologist with Drucker Brain Injury, MossRehab; Tom Smith, Director of Drucker Brain Injury, MossRehab; Larry Marr, Social Worker, MossRehab; Brenda Lenox, Occupational Therapist, MossRehab; Rachelle Rigous, CRRN, MossRehab

2006/08/04 Barbara A. Dively