Returning to School after a Brain Injury A Guide for Navigating the

Transcription

Returning to School after a Brain Injury A Guide for Navigating the
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
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Outcomes of Presentation
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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
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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
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TBI in its most mild form (concussion) is now more
recognized and recognizable than ever before.
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Epidemiology, cont’d.
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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)
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Less than 2% of children with TBI are referred
for Special Education services
(Di Scala & Savage, 2003).
Grandinette, Ruff, Shea 2011
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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
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…TBI Epidemiology, cont’d.
State of CALIFORNIA: # of TBIs PER YEAR:
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6,200,000 students X 3.22% = 199,640*
75% mild= 149,730
 25% Moderate-severe= 49,910
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*Some of these children did not survive
So…true or false??????
Grandinette, Ruff, Shea 2011
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TRUE!
According to the 2008-2009 California
Department of Education (CDE) Dataquest
statistics…
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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)
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These #s do not include students with ABI from non
traumatic causes
Grandinette, Ruff, Shea 2011
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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?”
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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)
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Grandinette, Ruff, Shea 2011
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After recognizing the problem…
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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
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To Whom Do We Refer Students?
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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
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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
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Typical TBI Symptoms in
Adolescents and Children
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…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
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Age of pediatric TBI as a factor
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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 2nd grade: reading skills are emerging,
developing or even delayed
(Farmer 1997)
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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
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UNDERSTANDING ELIGIBILTY
AFTER ATBI
Brain Injury
Congenital and Perinatal
(no period of normal development)
Perinatal
(e.g., birth stroke)
Congenital
(e.g., PKU)
State of Wisconsin Department
of Public Instruction
Acquired
(following a period of normal development)
Non-traumatic
(internal occurrence
e.g., tumor)
Traumatic
(external physical force)
Open
Closed
(e.g., gunshot) (e.g., fall)
Grandinette, Ruff, Shea 2011
Educational Eligibility for TBI
Requires….
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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)
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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.
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Brain Injury From Non-traumatic
Causes
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The TBI federal eligibility category does NOT
apply to acquired injuries caused by non-traumatic
events
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(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
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Grandinette, Ruff, Shea 2011
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
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If Assessment is Deemed Necessary to Establish Eligibility for
Special Education Services, the District Needs to Assess in the
Following Domains….
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Cognitive Development
Academic Achievement
Physical Development or
Motor Skills
Adaptive Development
 Social & Emotional
Development
 Communication
Development
 Vision/hearing &
other medical
concerns
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Special Education Legal Timelines
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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
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More frequently for students with ATBI due to recovery
Reassessment every 3 years to determine continued eligibility
& present levels of performance
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Required more frequently for students with ATBI
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Assessment Cautions….
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The formal evaluation setting may not capture problems
presented in less structured, real-life situations (Ylvisaker, 1989)
WHY??
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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
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Suggested Best Practices for Assessing Students
With ATBI
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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).
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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
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By Using Informal, Situational
Analysis& Environmental
Inventories
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Ecological Inventory/Assessment:
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Allows examiner to evaluate a student performance in various
ecologies/environments in natural settings during normal activities of the day
Situational Analysis
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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)
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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…
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DIS/Related Services
(require assessment)
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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
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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
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Other School Services
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Assistive Technology
Behavioral Intervention (ABA)
Paraprofessional Assistance
Vision therapy
Transportation
Audiological assessment & services
Grandinette, Ruff, Shea 2011
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What Rights Do Parents Have if District
Determines Their Child is Not Eligible?
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If the TBI is mild, only
accommodations may be
provided through a 504
Plan
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Program & Building
Access
Accommodations
Employment
Grandinette, Ruff, Shea 2011
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What Rights Do Parents Have if District Determines Their Child is Not
Eligible? (cont’d).
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After school has assessed and parents do not agree with
findings of assessment, they can request an IEEIndependent Educational Evaluation at district expense
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Schools DO contract with neuropsychologists!!
If parent provides their own neuropsychological
evaluation, the district only has to CONSIDER it
Grandinette, Ruff, Shea 2011
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Recovery from TBI, assessment by
Specialists and the legal case
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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.
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TBI in the eyes of a 3rd grade teacher
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“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.”
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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
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Grandinette, Ruff, Shea 2011
Profile of Performances
Verbal
Spatial
Attention
Memory
Learning
Executive
Functions
IQ
95 %tile
50th %tile
5th %tile
Grandinette, Ruff, Shea 2011
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Relative vs. Absolute Deficits
Absolute Decline
Relative Decline
AVERAGE
Below
2.5%
25%
Above
50%
75%
Grandinette, Ruff, Shea 2011
97.5
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Relative Deficits or Weaknesses
Verbal
Spatial Attention
Memory
Executive
Learning
Functions
IQ
95 %tile
50th %tile
5th %tile
Grandinette, Ruff, Shea 2011
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Case Study
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Case Study
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Date of Injury:
1st Testing:
2nd Testing:
3rd Testing:
4th Testing
3/19/1999
2/15/2001
9/03/2004
7/06/2006
Grandinette, Ruff, Shea 2011
11 years old
13 years old
16 years old
18 years old
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Motor Skills
Motor speed and dexterity preserved with some gains over time
Grandinette, Ruff, Shea 2011
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Attention and Concentration
Variable performances over time
Grandinette, Ruff, Shea 2011
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Spatial Abilities
Clear strength and preserved ability that was not compromised
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Verbal Abilities
Mild drop off over time, likely related to less efficient memory
Grandinette, Ruff, Shea 2011
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Memory Skills
Based on an age matched cohort, his memory is slightly declining
Grandinette, Ruff, Shea 2011
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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
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Compromised memory can result
in delayed drop of grades
TBI
Grades
3
4
5
6
Grandinette, Ruff, Shea 2011
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8
9
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Developmental Recovery
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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
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Summary and Conclusions
Grandinette, Ruff, Shea 2011
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Summary and Conclusions
Longitudinal testing also allows to assess where gains were evident
Grandinette, Ruff, Shea 2011
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Brain Functions
Physical
Emotional
Cognitive
Grandinette, Ruff, Shea 2011
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Patient-based Perspective
MEANING IN LIFE
W
O
R
K
FINANCIAL
Physical
Cognitive
Emotional
S
O
C
I
A
L
RECREATIONAL
Grandinette, Ruff, Shea 2011
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What About Students In Private
Schools?
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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
•
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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
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Students are in a Process of Recovery
Following ATBI…
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Once brain cells die, they do not recover, but
surviving brain tissue has the capacity to develop new
neuropathways
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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
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ATBI is a Developing Disability In Children…
Anticipate & Prepare for Future Learning/Psycho-social
Problems
Grandinette, Ruff, Shea 2011
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How long can we wait?
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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)
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Seek help early to: coordinate all professional
services, obtain TBI experts, and successfully
navigate the system
Grandinette, Ruff, Shea 2011
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Where does one seek help?
From…..
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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
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An ounce of prevention….
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Wear a helmet….it’s the law
Grandinette, Ruff, Shea 2011
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Dogs do it….
Grandinette, Ruff, Shea 2011
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Cats, Hamsters and even Turtles
do it…
Grandinette, Ruff, Shea 2011
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Daring Mice and Boxing Squirrels do
it…
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People should too….it’s worth a
pound of cure
Grandinette, Ruff, Shea 2011
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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 (38:571578, 2000.)
Bigler, Erin D., (1997) Childhood Traumatic Brain Injury (Ch. 1, p. 5.)
California Department of Education Educational Demographics Office. (2009). K12 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
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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 (2nd
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