Hope for Pediatric Acquired Brain Injury

Over my 25+ years as a psychologist dealing with brain injury, I have seen too many survivors fall through the cracks.   At the present time, there is no standardized system of care for children with brain injuries despite the fact that it is so prevalent.  Without proper care, survivors of TBI end up in psychiatric hospitals, abusing drugs and alcohol, on the street, jail and even worse.

 It is easier to commit a crime and get hold of an illegal weapon than it is to access proper services for TBI.

On January 8 of 2013, I participated in a wonderful conference  working towards the implementation of the National Pediatric Acquired Brain Injury Plan (PABI Plan) in New York State.

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The PABI Plan would create a standardized system of quality care that would be accessible to every child with an acquired brain injury, regardless of where they live or their insurance.

Below is the link to the newspaper article about the introduction of The National Pediatric Acquired Brain Injury (PABI) Plan Act, tabbed HR 2600. This is very exciting plan for all survivors of brain injury.

Newspaper article about national brain injury act

Throughout the day,  I participated in stimulating multi -disciplinary meetings, sharing information with leading professionals all working collaboratively towards this common goal.

Patrick Donohue, the founder of The Brain Foundation, is the force behind this amazing act. His daughter, Sarah Jane, was violently shaken by her baby nurse when she was only five days old, causing a severe Pediatric Acquired Brain Injury – PABI.

Here is a link to one of Sarah Jane’s appearances on the Today show on NBC with her dad Patrick.

To learn more about the Sarah Jane Foundation and their story check the link below http://www.thebrainproject.org

 The highlight of the evening for me was  when I was seated next to Craig Sears at dinner. Craig is a brain injury survivor and advocate.  Please go to the TBI Survivor section to see his story.
Craig Sears Story

Sarah Jane Donahue, brain Injury survivor Craig Sears and Paula Abdul at the PABI Plan dinner reception (1/8/2013

Sarah Jane Donahue, brain Injury survivor Craig Sears and Paula Abdul at the PABI Plan dinner reception (1/8/2013

Recently, Jenny, a TBI survivor who I had treated as a child, reconnected with me after 20 years.  Jenny had her first stroke at age 5 and since then has had a long history of  problems commonly associated with TBI.

Like many TBI survivors, the system dropped Jenny at age 21.  Her transitioning into adulthood has been nothing but disastrous.  Jenny had no access to appropriate referrals, interventions and resources.

Thanks to the Sarah Jane Brain Foundation and the PABI plan,  all the Jennys in the world will have hope!

5 thoughts on “Hope for Pediatric Acquired Brain Injury

  1. Thank you so much for illustrating my story. In taking interest in the Sarah Jane Brain Project.

    The mission of the Sarah Jane Brain Foundation is to fully fund and implement the National PABI Plan, which creates a seamless, standardized, evidence-based system of care that is universally accessible for all children and young adults with PABI regardless of where they live in the nation.
    •PABI is the #1 cause of death and disability for children and young adults in the U.S.

    •Over 3,000,000 new cases resulting in 643,000 emergency room visits, 80,000 hospital admissions, 17,000 permanent disabilities, and 12,500 deaths occur each year to children and young adults up to 25 years old in the United States.

    For myself, I wish on that July afternoon that there was a National Pediatric Acquired Brain Injury 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 Traumatic Brain Injury. I wish that when I needed it there were people to turn too an answers to the questions I didn’t even know I had and the resources in place for me. If there had been such a plan in place, my life and my family’s lives would be completely different today.

    I am looking for opportunities to be A Voice for Traumatic Brain Injury and bring all information to the media as well as the United States.

    Thank you in advance for being part of the Sarah Jane Brain Project and please share this site with others you think would be interested.

    Contact Info:
    Email: craig@thebrainproject.org
    Craig Sears
    National Advisory Board Family at Sarah Jane Brain Foundation

    • Craig, I try to do my small part helping as much as I can and am passionate about this issue. Your story and actions, however, have the magic and power to make people truly understand this puzzling issue and see that they are not alone! You, my new friend, are a true inspiration!

  2. Hi I just found out about Sarah Jane Brain Project – I have a 21 year old daughter who has an acquired brain injury due to radiation for leukemia she received at age 3 – she will transitioning out of the school program in June (age 21) and I need some help for her in the future – any info you can pass on will be appreciated.

    Thanks!

    • Hi. I am sorry to hear about your daughter. Where do you live? I’d like to hear more about your daughter to be able to make suggestions. I am happy to speak to you. Please send me an email or call me. Heidi Spitz

  3. Knowing firsthand how difficult it is to find resources for pediatric acquired brain injury, I’ve co-authored a series of books that may help as a resource. This is a six volume set including a parent’s guide to traumatic brain injury.
    TEDI, is a pediatric rehabilitative and educational program for children with special needs. For therapists, educators, medical professionals and family of young children who have suffered either traumatic injury to the brain, or for the child that has been born with, or acquired developmental conditions affecting cognition, mobility and communication. TEDI provides a complete program of curriculum based learning experiences and age appropriate activities, combined with therapeutic intervention: physical, occupational, speech-language and cognitive therapy.
    https://www.amazon.com/author/lesliemckerns
    (Scroll for all TEDI books in series.)
    I am so hopeful that these books can do a small part in improving the lives of our children. We will be working on a second set of programs for the school age child, and would love to have your feedback.

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