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St. Jude Brain Injury Network: Advocacy and Support for Brain Injury Survivors

St. Jude Brain Injury Network offers advocacy, information, and referrals to survivors and their families. We address concerns like social security benefits, vocational rehab, and housing, and provide support in community reintegration, education, and therapy.

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St. Jude Brain Injury Network: Advocacy and Support for Brain Injury Survivors

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  1. St. Jude Medical Center’s Brain Injury Network714.446.5626 David Bogdan (David.Bogdan@stjoe.org) Daniel Ignacio (Daniel.Ignacio2@stjoe.org)

  2. TBI StatisticsCourtesy of California Traumatic Brain Injury (CATBI) • Incidence of TBI in California (2010-14): • non-fatal TBI ER visit: 652,198 • “Treat/Release” TBI: 478,750 (73%) • Medi-Cal: 87,835 (18%) • Uninsured: 122,183 (26%) • Orange County Population (2013): 3,114,000 • Brain Injury Cases (2010-14): 97,110 (3%) • Estimating from “Treat & Release” rate for California (73%): 70,890 • Incidence Rates in the United States • (excluding military/veteran’s hospitals): Estimated 1.7 million TBIs occur each year (Vanderploeg, Belanger, Curtiss, Bowles, & Cooper, 2019) 70-90% are “mild” in severity (Faul, Xu, Wald, & Coronado, 2010)

  3. What is the Brain Injury Network? • When somebody enters a hospital or medical center with a brain injury… • he or she still has a brain injury upon discharge. • 73% is the “Treat and Release” rate of California • 43% of survivors have a related disability after one-year (Selassie et al., 2008). • Orange County: 97,110 survivors (2010-2014), therefore 41,758 survivors related disability • Treat & Release estimates (n = 70,890) This is where we hope to provide service: • We are an outpatient, community-based agency • that provides advocacy, information, and referrals • at no-cost to survivors and their families.

  4. St. Jude Brain Injury Network Areas of concern: How we address: We provide assistance including, but not limited to: Social Security, MediCare, Medi-Cal, & legal advocacy Getting back to work/resume writing/interview support phone calls, outings, establishing relationships Providing information on therapy (counseling), doctor referral support groups, professional speakers, research Tutoring/task completion/technology assistance Applications, talking to programs/offices, advocacy • We are dedicated to advocacy in 3 primary areas: • Community Reintegration • Education • Housing

  5. Common Referrals & Areas of Involvement Applying for Social Security benefits (SSI & SSDI) Neuropsychological testing Cognitive Training (ABI programs) Vocational rehab (Department of Rehabilitation) SROs, Assisted Living, SNFs, affordable housing Career counseling/counseling Survivor education programs Traumatic Brain Injury Support Groups & education programs

  6. Support Groups & Psychoeducation • For over 30 years, group psychotherapeutic services have been successfully implemented with TBI survivors • (Delmonico et al.; Prigatano, Fordyce, Zeiner, Roueche, Peppring, & Wood, 1984) • Reduces PCS in civilian populations - Neurobehavioral Symptom Inventory • (Comper et al., 2005; Cooper et al., 2015) • Psychotherapy effectively treats affective disturbances in the group format • (Block & West, 2013)

  7. CSU System: • Estimated 447,000 students & 45,000 faculty/staff across 24 CSU campuses (Ortega & Larsen, 2014) • 18,625 students and 1,875 faculty/staff per campus (est.)

  8. Cognitive Rehabilitation • 2 kinds: Compensatory & Restorative • Compensatory (CogSMART) represents techniques that improve cognitive functioning by teaching strategies (Storzbach et al., 2016) • Restorative (Brainwave-R) refers to activities that aim to strengthen functioning through repetitive training (Raymond, Bennett, Malia, & Bewick, 1996).

  9. Pilot Cognitive Rehabilitation Classes from Fall 2018 Compensatory Rehabilitation ONLY: St. Jude Brain Injury Network OMID Institute

  10. SPRING 2019: Compensatory & Restorative

  11. Fall 2019: Compensatory & Restorative

  12. Reported “Brain Injury” Themes from Support Group Attendees: • Acceptance from the self: • “I seem to be terrified to try to allow myself to get too close to someone because I’m too confused as far as where I am right now, about what I’m thinking right now, it’s just too confusing.” • Intimacy & Ambiguous loss: • “I have difficulties trusting… how do I know that you accept me for who I am… when I don’t even know who I am” • Acceptance from society & “Walking Wounded:” • “It’s hard it’s so hard to be accepted, because a brain injury is not enough to society to be accepted as a disability” • Belonging: • Camaraderie, trust emphasizes the importance of treating comorbidities.

  13. Working with TBI(Folzer, 2001; Prigatano & Klonoff, 1988, p. 247) • When delivering therapeutic services, facilitators should assist in: • coping with the loss of identity • Development of a new adaptive “self” • increase awareness of the survivors’ own emotions • provide psychoeducation to increase recognition of symptoms in a non-confrontational way • provide opportunities to rehearse regulatory social skills • The facilitator may want to: • Model patience and sensitivity • repeat information several times (the clients’ failure to remain engaged may be mistaken for resistance – cognition) • always encourage clients to be writing notes • remember that education is a critical function: • an effective facilitator modeling desirable behavior and teaches compensatory strategies • while mediating emotional reactions of members to direct feedback.

  14. References Block, C. K., & West, S. E. (2013). Psychotherapeutic treatment of survivors of traumatic brain injury: Review of the literature and special considerations. Brain Injury, 27(7-8), 775-788. doi: 10.3109/02699052.2013.775487 Comper, P., Bisschop, S. M., Carnide, N., & Tricco, A. (2005). A systematic review of treatments for mild traumatic brain injury. Brain Injury, 19(11), 863–880. Cooper, D. B., Bunner, A. E., Kennedy, J. E., Balldin, V., Tate, D. R., Eapen, B. C., & Jaramillo, C. A. (2015). Treatment of persistent post-concussive symptoms after mild traumatic brain injury: A systematic review of cognitive rehabilitation and behavioral health interventions in military service members and veterans. Brain Imaging and Behavior, 9, 403-420. Coronado, V. G., McGuire, L. C., Sarmiento, K., Bell, J., Lionbarger,M. R., Jones, C. D., Geller, A. I., Khoury, N., & Xu, L. (2012).Trends in traumatic brain injury in the U.S. and the public healthresponse: 1995–2009. Journal of Safety Response, 43, 299–307. Delmonico, R. L., Hanley-Peterson, P., & Englander, J. (1998). Group psychotherapy for persons with traumatic brain injury: Management of frustration and substance abuse. Journal of Head Trauma Rehabilitation, 13(6), 10-22. Faul, M., Xu, L., Wald, M.M., and Coronado, V.G. (2010). Traumatic Brain Injury in the United States: Emergency Department Visits, Hospitalizations and Deaths 2002–2006. Centers for Disease Control and Prevention: Atlanta, GA. Folzer, S. M. (2001). Psychotherapy with “mild” brain-injured patients. American Journal of Orthopsychiatry, 71(2), 245-251 Lerner, H. (2005). The dance of anger: a woman’s guide to changing the patterns of intimate relationships. New York, NY: HarperCollins Publishers. .

  15. References (cont.) Ortega, J., & Larson, B. (2014). Concussion: Fitting the pieces together for a best practices model [PowerPoint slides]. Retrieved from http://www.calstate.edu/risk_management/conferences/FTPT/documents/CONCUSSION_AWARENESS.pdf Prigatano, G. P., & Klonoff, P. S. (1988). Psychotherapy and neuropsychological assessment after brain injury. The Journal of Head Trauma Rehabilitation, 3(1), 45-56. Raymond, J. M, Bennett, L. T, Malia, K., & Bewick, C. K. (1996). Rehabilitation of visual processing deficits following brain injury. NeuroRehabilitation. 6, 229-39. 10.3233/NRE-1996-6309. Selassie, A. W., Zaloshnja, E., Langlois, J. A., Miler, T., Jones, P., & Steiner, C. (2008). Incidence of long-term disability following traumatic brain injury hospitalization in the United States, 2003. Journal of Head Trauma Rehabilitation, 23(2),123-131. Sosin, D. M, Sniezek, J. E., Thurman, D. J. (1996). Incidence of mild and moderatebrain injury in the United States. Brain Injury, 10(1), 47–54. Storzbach, D., Tawmley, E. W., Roost, M. S., Golshan, S., Williams, R. M., O Neil, M., Jake, A. J., Turner, A. P., Kowalski, H. M., Pagulayan, K. F., & Huckans, M. (2016). Compensatory cognitive training for Operation Enduring Freedom/Operation Iraqi Freedom/Operation New Dawn veterans with mild traumatic brain injury. Journal of Head Trauma Rehabilitation. doi: 10.1097/HTR.0000000000000228 Vanderploeg, R. D., Belanger, H. G., Curtiss, G., & Bowles, A. O. (2019). Reconceptualizing rehabilitation of individuals with chronic symptoms following mild traumatic brain injury. Rehabilitation Psychology, 64(1), 1-12. Vos, P. E., Alekseenko, Y., Battistin, L., Ehler, E., Gerstenbrand, F., Muresanu, D. F., Potapov, A., Stepan, C. A., Traubner, P., Vesei, L., & von Wild, K. (2012). Mild traumatic brain injury. European Journal of Neurology, 19, 191-198. doi:10.1111/j.1468-1331.2011.03581.x

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