Returning to School After Acquired/Traumatic Brain Injury: A Guide for Navigating the System Michael M. Shea, Jr. Esq., Sharon Grandinette MS, Ed. CBIST Ronald M. Ruff, Ph.D. Grandinette, Ruff, Shea 2011 1
Outcomes of Presentation Overview of pediatric ATBI/epidemiology Outline transition practices from medical care to appropriate school services Understand the relationship between the legal system and assessment timelines in which these rights are protected under the IDEA List the proper types of assessment for students with brain injury including, neuropsychological assessments Identify subtle signs of mild TBI in a school setting over time Describe how to successfully access and coordinate with outside agencies Explain strategies for academic, social, and behavioral success in school and the community Grandinette, Ruff, Shea 2011 2
Epidemiology: How big of a problem is childhood TBI? The Numbers are Staggering #1 Cause of pediatric death and disability in the United States Annual incidence 200 to 300 cases per 100,000 children Annual economic cost estimates are $7.5b to $10b (Yates, et al, 2010) Grandinette, Ruff, Shea 2011 3
TBI in its most mild form (concussion) is now more recognized and recognizable than ever before. Grandinette, Ruff, Shea 2011 4
Epidemiology, cont d. Countless sports related TBIs go unreported because the majority are MTBI cases (concussion without loss of consciousness) Kraus, et al., (2005) The number of children with TBI who are not seen in an emergency department or who receive no care is unknown. TBI rehabilitation services for children are not as readily available in comparison to adults (DiScala & Savage, 2003) Less than 2% of children with TBI are referred for Special Education services (Di Scala & Savage, 2003). Grandinette, Ruff, Shea 2011 5
TBI Brain Quiz TRUE or FALSE? TRAUMATIC brain injury (TBI) is often misdiagnosed or under-diagnosed as a special education disability category in schools. BEFORE you answer, let s do some math Grandinette, Ruff, Shea 2011 6
TBI Epidemiology, cont d. State of CALIFORNIA: # of TBIs PER YEAR: 6,200,000 students X 3.22% = 199,640* 75% mild= 149,730 25% Moderate-severe= 49,910 *Some of these children did not survive So true or false?????? Grandinette, Ruff, Shea 2011 7
TRUE! According to the 2008-2009 California Department of Education (CDE) Dataquest statistics Only 1,851 out of over 6,200,000 students enrolled in CA public schools were identified as eligible for special education with a TBI under the IDEA (Individuals with Disabilities Education Act & CA Title 5 Regulations) These #s do not include students with ABI from non traumatic causes Grandinette, Ruff, Shea 2011 8
Neurology and Neuroradiology 101 & TBI Skull fracture brain injury Brain injury can occur without skull fracture Imaging studies (CT, MRI, X-ray) are most always within normal limits (WNL) Glasgow Coma Scale scores (GCS) are usually WNL EEGs & ENGs are most often WNL Q: Any wonder why TBI has been called the unseen injury?
Childhood TBI: Deficits: Cognitive and behavioral problems are the usual sequelae (Di Scala 1991) Cognitive problems (usually first seen by teachers) are considered to be the most disabling of the residual injury (Levin 1992) The brain s key output is cognition (Ruff, 1999) Behavioral problems (usually first seen by family) are disturbing to parents and disruptive to family (Levin 1991) Grandinette, Ruff, Shea 2011 10
After recognizing the problem Parents and teachers are usually the first to recognize an issue TBI students are a diverse population; the injuries can disrupt learning, social/emotional/physical functioning the magnitude of the problem is often misunderstood (Bigler 1990) Family and teachers may not fully appreciate the impact on the student s cognition and performance in an academic setting (Lord-Maes 1997) Parents want to know Where do I turn for help? Seeking help can be quite confusing (Bigler 1990) The impact of TBI is unique for each child (Farmer 1997) Grandinette, Ruff, Shea 2011 11
To Whom Do We Refer Students? Schools for SP ED assessment to determine eligibility for an IEP (Individual Education Plan) Regional Center (injury prior to age 18) CCS-California Children s Services (to age 21) County Department of Mental Health (school makes referral) Department of Rehabilitation (as they exit school) Post Secondary Education-Disabled Student Services SSI Disabled Student Services at the college level Grandinette, Ruff, Shea 2011 12
Planning for School Reintegration During hospitalization/rehabilitation: Assist parent in referring child for special education assessment school (see attached sample letter*) Obtain parent s permission to release medical information to school Arrange home/hospital instruction, as needed Arrange for school personnel to visit student in the hospital/observe therapies Grandinette, Ruff, Shea 2011 13
Typical TBI Symptoms in Adolescents and Children poor attention and concentration, distractibility, hyperactivity, irritability, low frustration tolerance, poor motivation, apathy, poor anger control, aggression, anxiety, social isolation (McAllister 1992); often the most common are head ache, dizziness, irritability and memory disturbance (Fenichel 2001.) Grandinette, Ruff, Shea 2011 14
Age of pediatric TBI as a factor Unlike adults, children are in the midst of developmental changes Changes include physical, cognitive and behavioral functioning Childhood TBI can disrupt these changes Recovery and developmental changes become intertwined Consider TBI in 2 nd grade: reading skills are emerging, developing or even delayed (Farmer 1997) Grandinette, Ruff, Shea 2011 15
Accessing Special Education Services District must assess to determine whether or not a child is eligible for special education services, & if so, which services are the most appropriate; or, if not eligible, May determine if student qualifies for Section 504 of the Rehabilitation Act of 1973 for classroom accommodations Grandinette, Ruff, Shea 2011 16
UNDERSTANDING ELIGIBILTY AFTER ATBI Brain Injury Congenital and Perinatal (no period of normal development) Acquired (following a period of normal development) Perinatal (e.g., birth stroke) Congenital (e.g., PKU) Non-traumatic (internal occurrence e.g., tumor) Traumatic (external physical force) State of Wisconsin Department of Public Instruction Open (e.g., gunshot) Closed (e.g., fall) Grandinette, Ruff, Shea 2011
Educational Eligibility for TBI Requires. That a medical doctor make the diagnosis of an TBI & that the medical report be considered evidence of a TBI. In cases of an obvious disability caused by the TBI, or non traumatic ABI, verification of that medical disability/review of records may be all that is needed to qualify a student as eligible for special education under either TBI or OHI. IDEA Regulations: Part 300/D/300.305 (a) Grandinette, Ruff, Shea 2011 18
The Individuals with Disabilities Act Defines TBI as: an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child s educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas such as cognition; language; memory; attention; reasoning, abstract thinking; judgment; problem solving; sensory, perceptual, and motor abilities; psychosocial behavior; physical functions; information processing; and speech. The term does not apply to brain injuries that are congenital or degenerative, or to brain injuries induced by birth trauma. 34 Code of Federal Regulations 300.7 (c)(12 Discussion section of the Federal Register (Vol. 57, No. 189, p. 44842, Tuesday, September 29, 1992) it is stated that "The definition of traumatic brain injury does include an acquired injury to the brain caused by the external physical force of near-drowning. Grandinette, Ruff, Shea 2011 19
Brain Injury From Non-traumatic Causes The TBI federal eligibility category does NOT apply to acquired injuries caused by non-traumatic events (stroke, CNS tumors, infections to the brain, anoxic/hypoxic injuries) These students may qualify for services under the eligibility category of OHI-Other Health Impaired Grandinette, Ruff, Shea 2011 20
CA Definition of OHI having limited strength, vitality, or alertness due to chronic or acute health problems, including but not limited to: a heart condition, cancer, leukemia, rheumatic fever, chronic kidney disease, cystic fibrosis, severe asthma, epilepsy, lead poisoning, diabetes, tuberculosis and other communicable infectious diseases, and hematological disorders such as sickle cell anemia and hemophilia which adversely affect a pupil s educational performance. The health impairment will not qualify the pupil for special education if it is temporary in nature. [5 C.C.R. Sec. 3030(f).] Under state law, temporary means a disability which will terminate at some point and which, when it terminates, will not prevent the student from returning to a general education class without the need for any special interventions. [5 C.C.R. Sec. 3001(aj).] Grandinette, Ruff, Shea 2011 21
If Assessment is Deemed Necessary to Establish Eligibility for Special Education Services, the District Needs to Assess in the Following Domains. Cognitive Development Academic Achievement Physical Development or Motor Skills Adaptive Development Social & Emotional Development Communication Development Vision/hearing & other medical concerns Grandinette, Ruff, Shea 2011 22
Special Education Legal Timelines 15 calendar days to develop assessment plan 60 calendar days to complete assessment & hold IEP meeting to share findings 10 day written notification of scheduled IEP meeting is recommended Services begin when IEP is signed by parent IEP s held at least annually & within 30 days of parental request More frequently for students with ATBI due to recovery Reassessment every 3 years to determine continued eligibility & present levels of performance Required more frequently for students with ATBI Grandinette, Ruff, Shea 2011 23
Assessment Cautions. The formal evaluation setting may not capture problems presented in less structured, real-life situations (Ylvisaker, 1989) WHY?? A controlled/distraction-free environment may compensate for attention deficits Use of short tests/relatively brief testing sessions may compensate for reduced endurance, persistence, & attention span Very clear test instructions & examples may compensate for reduced task orientation & impaired flexibility in shifting from task to task. Grandinette, Ruff, Shea 2011 24
Suggested Best Practices for Assessing Students With ATBI Conduct a comprehensive evaluation that includes: Neuropsychological assessment data that indicates how a child thinks & learns from a neurological perspective, and a physical description of injury (including up-to-date medical status). Periodic, on-going multidisciplinary assessment to monitor healing & recovery from ATBI over time & document effectiveness of interventions Be aware that skills rapidly change over time in the first 6 months to a year after a ATBI. AND Grandinette, Ruff, Shea 2011 25
By Using Informal, Situational Analysis& Environmental Inventories Ecological Inventory/Assessment: Allows examiner to evaluate a student performance in various ecologies/environments in natural settings during normal activities of the day Situational Analysis Used in ecological inventories to examine combinations of situations in home, school, community Helps determine if students can replicate skills assessed during assessment in natural environments, allowing determination of present levels of performance to develop goals to pursue & participate in activities in the home, school & community based on actual activity (Ylvisaker, 1998) Grandinette, Ruff, Shea 2011 26
Where are students who are eligible being educated? Instruction in the hospital provided by local district Skilled nursing facility w/instruction Private Special Education Schools (NPS ) w/w/o residential component Home/Hospital Instruction Special itinerancy services at home Distance education/web based teaching Special Day Class (SDC-various levels) Resource Specialist Program (RSP) Speech services only Inclusion with supports/consultation/collaboration General Ed. class with 504 plan including DIS/Related services that include but are not limited to Grandinette, Ruff, Shea 2011 27
DIS/Related Services (require assessment) Speech & Language services Audiological services. Orientation & mobility services. Instruction in the home & hospital. Adapted physical education (APE). Physical & occupational therapy*. Vision services Counseling & guidance services, including rehabilitation counseling. Psychological services other than assessment & development of IEP program Specialized driver training instruction. Parent counseling & training. Health & school nurse services Social worker services. Specially designed vocational education & career development. Recreation services, including therapeutic recreation Specialized services for low-incidence disabilities, such as readers, transcribers, & vision & hearing services. Interpreting services. [EC 56363(b)(1)-(17)] *educationally relevant Grandinette, Ruff, Shea 2011 28
Other School Services Assistive Technology Behavioral Intervention (ABA) Paraprofessional Assistance Vision therapy Transportation Audiological assessment & services Grandinette, Ruff, Shea 2011 29
What Rights Do Parents Have if District Determines Their Child is Not Eligible? If the TBI is mild, only accommodations may be provided through a 504 Plan Program & Building Access Accommodations Employment Grandinette, Ruff, Shea 2011 30
What Rights Do Parents Have if District Determines Their Child is Not Eligible? (cont d). After school has assessed and parents do not agree with findings of assessment, they can request an IEE- Independent Educational Evaluation at district expense Schools DO contract with neuropsychologists!! If parent provides their own neuropsychological evaluation, the district only has to CONSIDER it Grandinette, Ruff, Shea 2011 31
Recovery from TBI, assessment by Specialists and the legal case Recovery from pediatric TBI can take years, waiting to formally pursue the matter legally is often the best course of action.why? Waiting gives the neuropsychologist and educational specialist valuable time needed to identify disabilities, assess relative strengths and weaknesses, interface with educators and plan strategies for the child s successful reintegration to the school, community and home. Waiting allows for longitudinal (multiple) neuropsychological follow up evaluations to chart recovery and identify any lingering deficits. Grandinette, Ruff, Shea 2011 32
TBI in the eyes of a 3 rd grade teacher I remember Chris vividly, he was quick-witted; quick with a response, not always at appropriate times, but after the accident, Chris was different and it didn't get better. He was -- the quick-wit was gone. He wasn't quick to reply. But definitely, yes, there was a difference. I just have this memory of a young man who was always quick with the repartee, always had something to say back. And afterwards he was just quiet and sullen and withdrawn. I missed that. Grandinette, Ruff, Shea 2011 33
Cognitive Assessment Sensory Input: Vision Hearing Touch Verbal Functions Spatial Functions Attention Memory Problem Solving Intelligence Motor Output: Talking Dexterity Movement Academic Testing Vocational Testing Grandinette, Ruff, Shea 2011 34
Profile of Performances Verbal Spatial Attention Memory Executive IQ Learning Functions 95 %tile 50 th %tile 5 th %tile Grandinette, Ruff, Shea 2011 35
Relative vs. Absolute Deficits Absolute Decline Relative Decline AVERAGE Below Above 2.5% 25% 50% 75% 97.5 Grandinette, Ruff, Shea 2011 36
Relative Deficits or Weaknesses 95 %tile Verbal Spatial Attention Memory Executive IQ Learning Functions 50 th %tile 5 th %tile Grandinette, Ruff, Shea 2011 37
Case Study Grandinette, Ruff, Shea 2011 38
Case Study Date of Injury: 1 st Testing: 3/19/1999 11 years old 2 nd Testing: 2/15/2001 13 years old 3 rd Testing: 9/03/2004 16 years old 4 th Testing 7/06/2006 18 years old Grandinette, Ruff, Shea 2011 39
Motor Skills Motor speed and dexterity preserved with some gains over time Grandinette, Ruff, Shea 2011 40
Attention and Concentration Variable performances over time Grandinette, Ruff, Shea 2011 41
Spatial Abilities Clear strength and preserved ability that was not compromised Grandinette, Ruff, Shea 2011 42
Verbal Abilities Mild drop off over time, likely related to less efficient memory Grandinette, Ruff, Shea 2011 43
Memory Skills Based on an age matched cohort, his memory is slightly declining Grandinette, Ruff, Shea 2011 44
Benefits of Longitudinal Exams 1999 2001 2004 2006 Verbal IQ 68% 81% 86% 86% Performance IQ 84% 96% 93% 79% Initial deficit in both IQ performances is more clearly identified Performance IQ appears to have declined somewhat Relatively reduced learning capacity may play a role in this comparison with other kids who are getting better with age Grandinette, Ruff, Shea 2011 45
Compromised memory can result in delayed drop of grades TBI Grades 3 4 5 6 7 8 9 Grandinette, Ruff, Shea 2011 46
Developmental Recovery School performances typically overlap across grade levels Students that are strong in a subject may do well in the year immediately following the TBI However, if there is a learning difficulty, a greater decline in performances can occur in years following the TBI Grandinette, Ruff, Shea 2011 47
Summary and Conclusions Grandinette, Ruff, Shea 2011 48
Summary and Conclusions Longitudinal testing also allows to assess where gains were evident Grandinette, Ruff, Shea 2011 49
Brain Functions Physical Emotional Cognitive Grandinette, Ruff, Shea 2011 50
Patient-based Perspective MEANING IN LIFE W O R K Physical Emotional Cognitive S O C I A L FINANCIAL RECREATIONAL Grandinette, Ruff, Shea 2011 51
What About Students In Private Schools? District is required to administer assessments, but if family wants services, the school must Develop a private school service plan for very basic services OR Enroll child in public school for more in depth special education services If it is a private school that accepts public funds, they have an obligation to provide accommodations or services through a 504 Accommodation Plan Grandinette, Ruff, Shea 2011 52
Students are in a Process of Recovery Following ATBI Once brain cells die, they do not recover, but surviving brain tissue has the capacity to develop new neuropathways Recovery may take weeks, months or years, & progress occurs with access to appropriate intervention Many children with ATBI may relearn basic tasks such as walking, talking, eating/feeding, dressing again, but physical recovery does not always equate with cognitive recovery Grandinette, Ruff, Shea 2011 53
ATBI is a Developing Disability In Children Anticipate & Prepare for Future Learning/Psycho-social Problems Grandinette, Ruff, Shea 2011 54
How long can we wait? CA law provides 2 years from majority (18+2) Exceptions are: Governmental entities (180 days) Uninsured motorist claims Underinsured motorist claims Medical negligence cases (varies on age of minor) Seek help early to: coordinate all professional services, obtain TBI experts, and successfully navigate the system Grandinette, Ruff, Shea 2011 55
Where does one seek help? From.. Attorneys experienced in brain injury cases The school district special education director An acquired/traumatic brain injury school reintegration specialist A pediatric neuropsychologist for appropriate assessment A special education advocate/attorney when student s rights under the IDEA are not provided Grandinette, Ruff, Shea 2011 56
An ounce of prevention. Wear a helmet.it s the law Grandinette, Ruff, Shea 2011 57
Dogs do it. Grandinette, Ruff, Shea 2011 58
Cats, Hamsters and even Turtles do it Grandinette, Ruff, Shea 2011 59
Daring Mice and Boxing Squirrels do it Grandinette, Ruff, Shea 2011 60
People should too.it s worth a pound of cure Grandinette, Ruff, Shea 2011 61
References Arroyos-Jurad, E, Paulsen JS, Merrell KW, et al: Traumatic brain injury in school aged children: academic and social outcome. Journal of School Psychology (38:571-578, 2000.) Bigler, Erin D., (1997) Childhood Traumatic Brain Injury (Ch. 1, p. 5.) California Department of Education Educational Demographics Office. (2009). K- 12 Public school enrollment by disability. [Data file]. Retrieved July 27, 2009 from http://dq.cde.ca.gov DiScala, C. Savage, R.C.(2003). Epidemiology of Children with TBI Requiring Hospitalization. Brain Injury Source: (6(3), 8-13.) DiScala, C., (1991) Children with Traumatic Head Injury, Archives of Physical Medicine and Rehabilitation (72:662.) Farmer, Janet, et al., (1997) Childhood Traumatic Brain Injury (Ch. 3 p. 33.) Fenichel, G. M., (2001) Clinical Pediatric Neurology (Ch. 2, p. 72.) Kraus,J.F. (2005).Epidemiology. In Silver, J.M., McAllister, T.W., Yudofsky, S.C. Textbook of Traumatic Brain Injury, p.7). Washington, D.C., American Psychiatric Publishing. Grandinette, Ruff, Shea 2011 62
References Continued Lord-Maes, Janiece, et al., (1997) Childhood Traumatic Brain Injury (Ch. 6, p. 101.) McAllister, T. W., (1992) Neuropsychiatric Sequelae of Head Injuries (15:522.) NFL Concussion Poster (July 27, 2010: www.nfl.com/news; see also www.cdc.gov/concussions) Ruff, R. M. (1999) The Evaluation and Treatment of Mild Traumatic Brain Injury (Ch. 7, p. 101.) Wisconsin Traumatic Brain Injury Initiative (2005) www.cesa11.k12.wi.us/speceduc/tbraininjury.cfm Yates, Keith, (2010) Long Term Outcomes of TBI in Infancy and Early Childhood, The Ohio State University Journal of Medicine and Public Health. Ylvisaker, M.(1998). Traumatic Brain Injury Rehabilitation: Children & Adolescents (2 nd ed.) Boston, MA: Butterworth-Heinemann. Grandinette, Ruff, Shea 2011
Sharon Grandinette, MS, CBIST Exceptional Educational Services Special Education Consultant/Trainer Acquired Brain Injury Specialist 326 Via San Sebastian Redondo Beach, CA 90277 Office: 310-465-0201 www.helpingkidsbrains.com
Ronald M. Ruff, Ph.D. San Francisco Clinical Neurosciences 909 Hyde Street, Suite 620 San Francisco, CA 94109 (415) 771-7833 www.ronruff.com
Michael M. Shea, Jr. Shea & Shea A Professional Law Corporation The James Square Building 255 North Market Street, Suite 190 San Jose, CA 95110 (408) 292-2434 (831) 620-1212 www.shea-shea.com www.braininjurycalifornia.com