PABI Plan - The Sarah Jane Brain Project

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CHAPTER 7: Categories of Care: Transition to Adult Life Following PA/TBI Introduction As adolescents transition into adult life with a brain injury sustained in childhood, they and their families confront yet again a major set of challenges as they navigate this most significant transition. In the best scenario, the older adolescent has had good, comprehensive medical services that have addressed all of his or her general pediatric as well as specific neurological, rehabilitative, psychological, and therapeutic services particular to his or her brain injury-related needs. The best background situation would also see this young adult entering the world of work or postsecondary education with a long history of successful special education interventions that have been particularly tailored to his neuropsychological profile of strengths and weaknesses, with consideration of personal interests, goals, and family values. Finally, the individual who is optimally prepared to make this leap into adult life following pediatric brain injury will have a reasonably well developed set of social skills, interpersonal experiences, and involvement in recreational pursuits, camp programs, and group activities centered around areas of interest shared with other same-age peers. In this scenario, the older adolescent’s well-prepared parents would have been educated in the wide variety of community resources that have supported their son’s or daughter’s development of appropriate independence, assumption of social responsibilities, and they will be ready to continue in the process of letting go of their child from a home-centered, family-centered social life to a more independent social center focused outside the family home. Even in this very best of situations, which is likely the minority of pediatric ABI situations, these very well-prepared families and young adults face a variety of significant hurdles as they navigate the transition into adult life following pediatric acquired brain injury with their son or daughter. To survey the landscape of this transition as carefully as possible, we will consider the current status, the current problems, and the clinical and research data needs pertinent to three aspects of the transition into adult life following pediatric acquired brain injury: 1) medical and therapy care, including mental health, 2) the transition from school to work including the primary shift of focus from public school to postsecondary education, vocational preparation, and work, and 3) support of social development from social life centered on the family of origin to social life based in relationships outside the family, friendships, and independent, community-based living. Current status, problems faced, and needs vary dramatically depending on whether the individual has a high need for services and specialized resources or a more circumscribed, less intensive need for services and specialized programs, within each of these three aspects of care. Therefore, we will further delineate “high need” and “low need” pathways. The pathways of care in medical, school, and social transitions into adult life for children who have PA/TBI are pictorially represented in Figure 1 below. In Figure 6 below, the top pathway in each domain, in darker blue, describes the status for children, adolescents, and young adults who have higher levels of need and the lighter path in pale blue underneath describes the situation for individuals who have lesser degree of needs. 50
In addition, as we see tens of thousands of young veterans under 25 years old returning from Iraq and Afghanistan with mild to severe brain injuries due to war conditions, the complexities of transitioning from a military environment back into a dynamic home-life they left or a brand new family they just recently began presents considerable and unique challenges that demands a similar systematic approach. Pathways of Care: Medical, School and Social Transitions to Adult Life for Children who have PA/TBI Medical and Therapy Services, including Mental Health PT, OT, Speech Psychiatric/behavioral PT, OT, Speech Psychiatric/behavioral Birth-3 Birth-3 Child Find Child Find Special Education Special Education School – Post-Secondary Education / Work Birth-3 Birth-3 Child Find Child Find Special Education Special Education Residential/day treatment for severe behavioral disorders 51 TCH Insurance coverage of post acute medical care ABI training / education for CMHC personnel and community TCH Age 14 Age 14 District Transition Services Transition Program (18-21) TBI / ABI Teams District Transition SWAP DOE – DVR Partnership Extreme variability in services district to district, school to school Social: Family-based – Community-based Section I: Current Status BOEC Boy / Girl Scouts Lack of opportunities for informal social interactions Clubs School-based activities Community recreation programs Support Groups Infant Child Adolescent Adult FIGURE 6: Pathways of Care PT, OT, Access to adult ABI Medical Care CCBs For fee programs Age 21 Independent Living Centers Job Accommodation Network DVR Age 21 DVR Workforce Centers College LD Student Center Age 25 Social Skills Development Training CCBs Independent Living Centers Day programs CCBs Residential Living Pediatric to Adult Medical and Therapy Services, including Mental Health Medical. Medical and therapy services include general medical care such as that which is provided by a primary care provider (PCP), as well as medical specialties particular to the best
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The Honorable Kathleen Sebelius Sec
Page 3 and 4: promote the integration and full in
Page 5 and 6: The National Pediatric Acquired Bra
Page 7: Phase Three consisted of having the
Page 10 and 11: the fact that their brains are stil
Page 12 and 13: methods developed by the SJBP to sh
Page 14 and 15: Two-Year Milestones Quarter 1: •
Page 16 and 17: Figure 2: CDC figures for death and
Page 18 and 19: PA/TBI and their families, delivere
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Page 28 and 29: service was developed for children
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Page 32 and 33: 8. In addition, ongoing education a
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Page 58 and 59: Social Opportunities The services a
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Page 90 and 91: Summary of PABI Grant Proposal cont
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Barrow Neurological Institute / St.
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Employment Education Postgraduate T
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Certifications Neuroscience Grand R
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Sarah Jane Brain Family State Lead
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UAMS/Arkansas Children's Hospital R
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Program Director/Principal Investig
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C. Research Support Ongoing Researc
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Mattel Children's Hospital UCLA Pro
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BIOGRAPHICAL SKETCH Provide the fol
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17. Madikians A and Giza CC. A Clin
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The Children's Hospital Profile con
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CURRICULUM VITAE JEANNE E. DISE, Ph
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Curriculum Vitae Jeanne E. Dise Pag
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Yale‐New Haven Children's Hospita
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Yale‐New Haven Children's Hospita
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2001 - Associate Professor, Sect of
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Major goal: to provide education in
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Nemours / Alfred I. duPont Hospital
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First Name: Michael MI: A Last Name
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Children's National Medical Center
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University of Miami Miller School o
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FF Principal Investigator/Program D
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Huang TT, He D, Kleiner G, Kuluz J.
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Children's Healthcare of Atlanta Pr
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Children's Healthcare of Atlanta Pr
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Principal Investigator: Haarbauer-K
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Center on Disability Studies at The
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Jean L. Johnson, DrPH April 19, 200
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Jeffrey K. Okamoto M.D. Curriculum
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Idaho State University / Institute
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NAME RUSSELL C. SPEARMAN BIOGRAPHIC
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Spearman, Russell, C Spearman, R.C.
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RESEARCH FUNDING Current Support: I
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University of Illinois Chicago Prof
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University of Illinois Chicago Prof
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1997 Margaret Faust Thesis Award, S
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James Whitcomb Riley Hospital for C
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PROGRAM DIRECTOR: Jodi L. Smith, Ph
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American Association of Anatomists
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IU Faculty Steering Committee ‐ 7
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University of Iowa Children's Hospi
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NAME Lindgren, Scott D. eRA COMMONS
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Arroyos-Jurado, E., Paulsen, J.S.,
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Center for Child Health and Develop
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Center for Child Health and Develop
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Tyler 2 Glang, A., Dise-Lewis, J.,
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Tyler 4 DePompei, R., Glang, A., &
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University of Kentucky Hospital Pro
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University of Kentucky Hospital Pro
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Joseph A. Iocono, M.D. Curriculum V
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Joseph A. Iocono, M.D Curriculum Vi
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Louisiana Health Care Quality Forum
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Shannon Robshaw, MSW is the Executi
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Maine Institute of Human Genetics a
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Maine Institute of Human Genetics a
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Principal Investigator/Program Dire
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Kennedy Krieger Institute Profile c
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Kennedy Krieger Institute Profile c
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Children's Hospital of Boston and H
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Date Updated: November 5, 2008 CURR
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2001- Member, Advisory Committee Ha
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underway to best direct prevention
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2. Mooney DP, Lewis JE, Connors RH,
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40. Waltzman M, Baskin M, Wypij D,
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19. Downard C and Mooney DP. Pediat
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47. Kangas KK, Lee LK, Forbes P, Os
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29. Kansas Trauma Conference, Wichi
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Date Prepared: January 5, 2009 Name
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Regional 2006- Vice President of Ma
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Honors and Prizes Year Name of Hono
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2000 Pediatric Spine Injuries Singl
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2006 Infant Skull Deformities Pedia
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2002 Management of Sports-related C
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Clinical Innovations I have been ab
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10. Dunn IF, Proctor MR, Day AL. Lu
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Trauma Surgery, Neurology, Neuropsy
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Michigan Public Health Institute an
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Michigan Public Health Institute an
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Vonderheid, S.C., Pohl, J. M., Tann
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Mayo Clinic Profile continued Title
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Mayo Clinic Profile continued Title
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LICENSURE Minnesota HONORS/AWARDS S
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Spina Bifida in Adulthood Physical
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Sherilyn W. Driscoll, MD Page 6 of
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-Implementation of new pediatric wh
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BIBLIOGRAPHY Peer-reviewed Articles
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Children's Rehabilitation Services
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Curriculum Vitae Shannon Janine Smi
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Shannon Janine Smith, MD Page 2 Hon
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Center, Pediatric Grand Rounds Shan
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Saint Louis Children's Hospital Pro
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Saint Louis Children's Hospital Pro
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Completed Research Support Principa
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Montana State University Billings /
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Montana State University Billings /
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• Region IV Paraeducator Summer I
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Madonna Rehabilitation Hospital Pro
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Madonna Rehabilitation Hospital Pro
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Staff Occupational Therapist: 1997-
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Sunrise Children's Hospital Profile
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Sunrise Children's Hospital Profile
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Dartmouth Medical School Profile co
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BIOGRAPHICAL SKETCH NAME POSITION T
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Brain Injury Association of New Jer
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Biographical Sketch Barbara Geiger-
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University of New Mexico School of
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Mount Sinai Medical Center Profile
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The Clinical Center for the Study o
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NAME Stephen R. Hooper eRA COMMONS
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Hooper, S.R., Hatton, D., Schaaf, J
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Still pending Profile continued Tit
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Cincinnati Children's Hospital Medi
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Oklahoma State University / Center
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CURRICULUM VITAE NAME Stanley E. Gr
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Courtesy Staff, 1990-1998 Leave of
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OSU-CHS International Medicine Club
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ViroPharma Protocol 637-303: Princi
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Media presentations: Medical Minute
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Teaching Research Institute and Wes
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BIOGRAPHICAL SKETCH NAME POSITION T
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Voss, J., Stevens, T., Glang, A., &
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Children's Hospital of Pittsburgh o
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BIOGRAPHICAL SKETCH Provide the fol
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C. Research Support. List selected
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Puerto Rico Medical Center / Univer
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Puerto Rico Medical Center / Univer
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LICENCE TO PRACTICE MEDICINE: (plac
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REFERENCES Dr. Nathan Rifkinson, UP
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Hasbro Children's Hospital Child Pr
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Hasbro Children's Hospital Child Pr
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1990-1996 Director of Medical Progr
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infant death and suspected physical
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Medical University of South Carolin
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Medical University of South Carolin
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Role: PI Principal Investigator/Pro
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Center for Disabilities / Sanford S
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Center for Disabilities / Sanford S
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• February 2004 - May 2005: Indep
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• September 2008: Presentation at
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• Coordinator for LEND (The South
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University of Tennessee Profile con
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University of Tennessee Profile con
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4. Johnson, R. K., Hough, M. S., Ki
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Center for BrainHealth / The Univer
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Center for BrainHealth / The Univer
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McCauley, S.R., McDaniel, M.A., Ped
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Levin, H. S., Mendelsohn, D. B., Li
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University of Utah Profile continue
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University of Utah Profile continue
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5. Statler KD, Jenkins LW, Dixon CE
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F. Invited Presentations Internatio
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The Vermont Center for Children, Yo
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The Vermont Center for Children, Yo
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2006-Present Chairman of the Child
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Abdellaoui A, Bartels M, Hudziak JJ
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UVA Children's Hospital and Kluge's
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UVA Children's Hospital and Kluge's
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B. Selected peer-reviewed publicati
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University of Washington / Harborvi
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University of Washington / Harborvi
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West Virginia Brain Injury Associat
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West Virginia Brain Injury Associat
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Phone: (304) 345-7757 405 Capitol S
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Children's Hospital of Wisconsin Pr
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Children's Hospital of Wisconsin Pr
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Brain Injury Association of Wyoming
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EDUCATION Dorothy Worrell 2302 Sage
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of Developmental Disabilities; assi
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PUBLICATIONS Member of VISIONS Admi
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n/a Profile continued Title/Descrip
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References 1. Adelson, P.D. (2008).
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30. Centers for Disease Control and
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62. Haddon, W. (1973). Energy damag
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96. Perel, P., Yanagawa, T., Bunn,
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