PABI Plan - The Sarah Jane Brain Project

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unemployment, public-assisted housing, and incarceration). Figures 3 & 4 depict the current and proposed approach to intervention supports and concomitant costs of each. Figure 3. Effects on child/youth functioning and related costs of inadequate treatment supports. Figure 4. Effects on child/youth functioning and related costs associated with intervention and supports. 38
Family Perspective: Once the child/young adult returns home, families must come to terms with the changes in their child’s functioning and, very likely, the need to provide increased levels of care due to physical and cognitive disabilities. The stress on parents created by caring for the injured child/young adult often leads to increased marital conflicts and high levels of psychological symptoms and distress in family members. The picture for families usually does not improve with time; familial distress is both progressive and enduring. Further, across society, the number of family members available to help with caregiving has decreased, placing more demands on the primary caregiver. As the social network of the person with PA/TBI shrinks, family members must assume a greater support role and therefore may become somewhat socially isolated. Educator Perspective: Although PA/TBI is a high-incidence medical event and tens of thousands of children sustain long-term disabilities resulting from PA/TBI every year, from the point of view of the United States Department of Education and most State Departments of Education, PA/TBI is a lowincidence disability. Many children with PA/TBI are not identified and served appropriately in schools because of the perceived low incidence as well as a number of other factors (e.g. lack of awareness of educators, poor communication about PA/TBI between medical and educational systems, emergence of learning and behavior problems misattributed to other disabilities). Service Provider Perspective: Personnel from agencies that serve children and young adults with disabilities are, like educators, unfamiliar with the needs of children and young adults with PA/TBI and their families and so are ill-prepared to meet those needs. Although PA/TBI is considered a developmental disability (DD) when it occurs before age 18 (in most states), providers of DD services see few clients with PA/TBI. Families are often unaware that they are eligible for such services. Thus, service providers experience lack of training and experience specific to PA/TBI similar to that of educators. Solutions: The solution to this complex problem requires a comprehensive and coordinated system of identification and service provision, involving child/family services, policy development and education for hospital personnel, “standard of care” programs that explicitly link hospital experts with community-based school and medical personnel before the child/young adult is discharged from the hospital, capacity building for schools and other community agencies, and an integration of research and practice. This system is reflected in the Sarah Jane Brain Foundation Model for integration of research, services and supports for children with PA/TBI and their families. The four components of the model, depicted in Figure 5, are outlined below. 39
Page 1 and 2: 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
Page 20 and 21: appropriately in the care of the ch
Page 22 and 23: CHAPTER 2: The TBI Model System and
Page 24 and 25: 2. States need to “buy” into id
Page 26 and 27: implications of shaking a baby; and
Page 28 and 29: service was developed for children
Page 30 and 31: a. There is a lack of evidence for
Page 32 and 33: 8. In addition, ongoing education a
Page 34 and 35: While there are often significant i
Page 36 and 37: are largely unknown. In particular,
Page 38 and 39: Family Perspective: Without early i
Page 40 and 41: 4. Improve the specific identificat
Page 44 and 45: REFERRAL FROM ACUTE CARE, REHABILIT
Page 46 and 47: understanding determinants of long-
Page 48 and 49: Research - Increase capacity of loc
Page 50 and 51: Alternatively, indirect effects on
Page 52 and 53: Specific questions regarding tracki
Page 54 and 55: CHAPTER 7: Categories of Care: Tran
Page 56 and 57: care of syndromes associated with a
Page 58 and 59: Social Opportunities The services a
Page 60 and 61: Finally, a third area of problem af
Page 62 and 63: CHAPTER 8: Category of Care: Rural/
Page 64 and 65: • Lack of public transportation
Page 66 and 67: • Provide consequences for wastin
Page 68 and 69: Rural / Tele-health issues during A
Page 70 and 71: educated and thus are less aware of
Page 72 and 73: Chapter 9: Category of Care: The Vi
Page 74 and 75: "To improve the quality of our heal
Page 76 and 77: Registry technology has been used a
Page 78 and 79: CHAPTER 10: Organizational Structur
Page 80 and 81: Northeast Region: New York Mid-Atla
Page 82 and 83: State IT Manager: primary responsib
Page 84 and 85: translational data for their Catego
Page 86 and 87: CHAPTER 11: Financing the PABI Plan
Page 88 and 89: projects, a smaller state will have
Page 90 and 91: Summary of PABI Grant Proposal cont
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Sarah Jane Brain Family State Lead
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The University of Alabama at Birmin
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h Principal Investigator/Program Di
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The Children's Hospital at Providen
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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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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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