The document discusses the educational needs and services for children with epilepsy, covering various evaluations, interventions, and planning strategies for their education. It emphasizes the importance of early interventions, appropriate evaluations, and the roles of different professionals in addressing the cognitive, emotional, and social challenges these children may face. Additionally, it outlines parents' rights under the Individuals with Disabilities Education Act and the processes for obtaining special education services and support.

1. Educational Needs and Services for Children with Epilepsy David H. Salsberg, Psy.D., DABPS © Rusk Institute of Rehabilitation The Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders NYU Langone Medical Center

2. When to become concerned What professionals do you consult with What evaluations are available How to prepare What to do with the information Special Education or not Interventions Parents and Professionals

3. Myriad of Labels/Diagnoses, Tests, Scores, and Interventions WPPSI-III, WISC-IV, WIAT-II, NEPSY-II… LD, PDD, ADD, ADHD, SI, ED, APD, TBI… PT, OT, ST, IEP’s, EI, CPSE, CSE, 504 …

4. Educational Implications for Children with Epilepsy Etiology of Seizures underlying causes/conditions Seizures frequency/control Medications and effects Age at Onset Secondary effects missing school availability for learning emotional/family/psychological All can contribute to a variety of learning and attentional difficulties in children.

5. Issues in Educational Planning Seizure plan Nurse Health paraprofessional Medications and effects Effects on learning Attention Fatigue Stigma and Social Considerations Dietary or activity restrictions Emotional and family issues affect educational planning

6. When to take notice Developmental lags noted Discrepancy between skill area and “norm” or expected Discrepancy between child’s own individual strengths and weaknesses Signs/expressions of frustration; low self-esteem Social skills difficulties Mood/behavior changes Academic and achievement difficulties

7. Birth to 3 Start with Evaluations – specific or more comprehensive? Early Intervention – funded Private therapists Need team – integrated approach Center-Based Program / Home program

8. When in doubt refer for evaluation Need to refer early If too early to qualify – need to monitor Need to intervene earlier or can miss developmental window of opportunity Imperative in language skills development

9. Ages 3 - 5 Start with Evaluations – Specific or more comprehensive? Therapy specific treatments CPSE – Board of Education/District Preschool options SEIT Crucial to evaluate early enough to make decisions prior to Kindergarten.

10. School Age Schools start with pre-referral interventions Evaluations – specific or more comprehensive? Committee on Special Education (CSE) Pros and cons of evaluations, classifications, Section 504, legal issues Therapies School Placement considerations

11. Primary Evaluations Psychological Psychoeducational Neuropsychological History Intelligence Testing Behavioral Assessment Emotional/Personality Psychological and Full Academic Achievement All of the above and further exploration of areas of strengths and weaknesses

12. Developmental Evaluations Developmental snapshots to guide current treatment planning and diagnosis Needs ongoing monitoring and reassessment of treatment plan Not correlated with later IQ Limitations of diagnoses/labels at an early age

13. Goal of Neuropsychological Testing Go Beyond IQ and academic scores to provide a complete picture of the child’s cognitive, learning and social/emotional functioning across many domains related to brain function. Should be functional perspective with clear and practical recommendations.

14. Testing Professionals Psychologists School/Educational (Master’s, Doctorate) Clinical Ph.D., Psy.D. Neuropsychologists

15. Other Disciplines/Team Neurology Pediatrician/Developmental Pediatrician Nursing Psychiatry Physiatry Physical Therapy Speech and Language Therapy Occupational Therapy Special Educators/learning specialists All have specific scopes of practice

16. Pediatric Specialization Experience Rapport Knowledge of educational system Limits of overly specialized, diagnosis focused evaluations, clinics

17. Specific Issues in Epilepsy All of the above Experience with Epilepsy and range of learning, attentional and psychological issues Timing and locations of evaluations Reason for referral may dictate or limit evaluation (i.e.: pre-surgical evaluation)

18. District/School vs. Independent Evaluations Independent evaluation: Parental control Timing/flexibility of evaluation Goal should be to evaluate the child holistically not just to get an evaluation done Specific recommendations No conflict of interest Needs to provide appropriate documentation and recommendations to be accepted and useful Be sure to understand timing/procedural issues

19. Variability in Reports Tester: Training Style Organization/Setting Tests used Who person is writing for Referral Question

20. Variability in Tests Used Examiner’s choice/comfort level Availability of Tests Age of child Clinical Judgment

21. Preparation for Evaluation - Parents Educate yourself regarding learning issues and process Delineate areas of concern/goals of evaluation Understand clinician’s scope of experience and practice and ability to assess with a team Should not focus primarily on single label Expect written report with practical recommendations that is also geared toward specific goal (ie: funding, admission…) Assure ongoing communication/follow-up Parents should receive feedback and then written report before school, district

22. Preparation for Evaluation - Child Present evaluation in non-threatening, relevant and developmentally appropriate manner Coordinate terminology and evaluation process with clinician Consider classroom/therapy observations Discuss specific behavioral/stylistic issues with clinician Provide work samples, book bag, outside of school examples of concerns Child should receive some form of feedback at the end

23. Factors Impacting Testing Why referred? Motivation/Attitude Rapport Time Frame of testing Disabilities Need to know what each test measures/doesn’t measure Age Culture/Language Qualitative information necessary with scores Medication Seizure status In hospital

24. Overall Cognitive Functioning Intelligence Testing - IQ In neuropsychological and/or educational evaluation IQ test is used as starting point Normative Comparison Limitations of overall scores Limitations of IQ as a construct

25. IQ Scores IQ scores are often used as marker – need to make sure it is a good one! Overall scores do not take into account variability in scores, especially Full-Scale IQ

26. Discrepancy Based LD Evaluation Discrepancy between IQ and achievement Discrepancy between child and same age/grade peers *Discrepancy between child’s own abilities and what should be expected What is clinically meaningful should translate to what is educationally and legally relevant

27. IQ Scores In an effort to broaden the construct of IQ newer IQ measures incorporate numerous skills Most notable – WISC-IV – can have high “traditional” IQ areas (Verbal, Performance) and have Full-Scale IQ lowered by Processing Speed and Working Memory General Abilities Index – not always used but should be in many cases

28. Preschool Wechsler Preschool and Primary Scale of Intelligence-III (WPPSI-III) Ages 2:6 – 7:3 Limitations of ERB

29. School Age IQ Wechsler Intelligence Scale for Children-Fourth Edition (WISC-IV) Ages: 6 – 16:11 Stanford Binet Intelligence Scales – 5 th Edition Ages 2:0 – 89:11 Wechsler Adult Intelligence Scale-Fourth Edition (WAIS-IV) Ages: 16 and up Wechsler Abbreviated Scale of Intelligence (WASI) Ages: 6 and up

30. Speech and Language Neuropsychologists screen these areas in relation to full battery – gather from Speech-Language Evaluators Speech/Oral-Motor not the same as Language Need to gather audiological testing information Look at expressive and receptive skills in a variety of contexts Auditory Processing - APD Adds valuable information to IQ scores Augmentative Communication

31. Visual-Motor/Visual-Perceptual Parts of evaluations overlap w/ OT, especially in neuropsychological evaluation Visual-Perceptual Neglect / Inattention Visual-Motor Apraxia Sensory Integration Assistive Technology Gross-Motor - PT

32. Other Areas of Neuropsychological Evaluation Attention and Concentration (In 1:1 structured testing setting) Memory visual; verbal; procedural; recall vs. recognition Executive Functioning: Planning, organization, sequencing, working efficiently, flexibility, impulsivity

33. Executive Functioning/Attention and Concentration Impulse control Distractibility Attention: Focused; selective; sustained/vigilance Auditory/Visual Not only attention – but organization, consolidation, etc… Planning, organization, time management Mental flexibility May not manifest until older

34. Memory Most common complaint – but influenced by attention/executive functioning skills Visual Verbal Procedural Recall vs. recognition Short-term vs. long-term Long-term – usually intact – but retrieval strategies may be impacted

35. Academic Achievement Tests: Limitation of brief screening of single-word reading, spelling and arithmetic in diagnosing learning problems. Reading: decoding, sight words, comprehension, speed, fluency… Need different tests for reading comprehension Teacher estimates are too subjective. Importance of, but also limitations of Grade-Equivalents. Standard Scores may be based on age or grade – very important.

36. Problems in Diagnosing LD Discrepancy analysis Qualitative/subtleties of difficulties Structured 1:1 setting Difficulties do not always manifest themselves yet or on certain tests.

37. Personality/Emotional Testing Projectives Rorschach (Exner Comprehensive System Scoring) Thematic Apperception Test Roberts Apperception Test – 2 Sentence Completion Clinical Interview Objective measures MMPI-A or MMPI-2 BASC-2 PIC/PIY All dependent on cognitive skills Rating Scales – limitations but widely used – be careful – needs to correspond with clinical observation, other data….

38. Depression Anger Anxiety Reality Testing Defenses Coping abilities/style Motivation Self-esteem/confidence Frustration tolerance Emotional functioning needs to be given more concern before behavioral manifestation

39. Family/Developmental issues Independence/Dependence Depending on age of onset may not have a goal of returning to previous level of independence and autonomy/achievement. Parents often more protective ‑ furthering these difficulties Fantasy of all-protective parent/safe world potentially impacted Social Issues

40. Adaptive Functioning Activities of Daily Living Measures: Vineland-2 ABAS-II Observation Interviews Needed for diagnosis of Mental Retardation

41. Individuals with Disabilities Education Improvement Act of 2004 (IDEA 2004) Purpose: To ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living. 20 U.S.C. Sect. 1400(d)

42. Individuals with Disabilities Education Act All children with disabilities receive a free appropriate public education (FAPE) A school district must provide special education and related services (PT, OT, Speech, Special Education, Counseling, Health paraprofessional) at no cost to the child or his/her parents. Only required to provide what’s appropriate – not optimal or best

43. Parental Referral to Local Education Authority Write a letter to the Chairperson of your Committee on Special Education requesting an evaluation for possible special education needs. Federal and New York State law requires that Districts complete the evaluation process within 60 school (business) calendar days. All communication with your district should be in writing, and you must have proof of delivery of all communication. Your School District cannot refuse to evaluate your child upon your request.

44. Evaluation Parents must consent to an initial evaluation. A variety of assessment tools and strategies must be utilized to gather relevant functional, developmental, and academic information about the child. This includes information provided by the parent. No single measure or assessment may be used as the sole criterion for determining whether a child is a child with a disability or to determine an appropriate educational program. Must be appropriate to be used with that child. Copies of results of all assessments performed must be provided to the parents, at no cost.

45. Identification/Development of an IEP Determination of eligibility Classification Program Recommendation Present Levels of Academic Performance Goals/Objectives Related Services

46. Classification Section 504 - Section 504 of the American with Disabilities Act requires recipients to provide to students with disabilities appropriate educational services designed to meet the individual needs of such students to the same extent as the needs of students without disabilities are met. A 504 Accommodation does not require an IEP, but simply provides for classroom modifications and/or related services CPSE – Preschooler with Disability CSE – 13 Classifications

47. Classification Autism Deafness Deaf/Blindness Emotional Disturbance Hearing Impairment Learning Disability Mental Retardation Multiple Disabilities Orthopedic Impairment Other Health Impairment Speech or Language Impairment Traumatic Brain Injury Visual Impairment including Blindness *Can have very different implications for services and placement

48. Placement This is performed at the CSE meeting, except in New York City, where this is done by the placement office. You do have the right to view any placement proposed for your child. Charge and goal is for the least restrictive environment (LRE)

49. School Placement Section 504 – Not CSE Public School General Education with related services Therapies Special Education Teacher Support Services (SETSS) Paraprofessional Inclusion /Co-teaching/CTT 12:1 12:1:1, 8, 6…. NPS – approved schools http://www.vesid.nysed.gov/specialed/privateschools/ Carter Funding

50. Dispute Resolution Independent Educational Evaluation (IEE) Parent has the right to an IEE if they disagree with an evaluation obtained by the district Upon request by a parent for an IEE, a District must either file a due process complaint to show that its evaluation is appropriate or ensure than an IEE is provided at public expense Mediation Voluntary; must be conducted by a qualified and impartial mediator; must be paid for by the District, who maintains a list of qualified mediators that are assigned on a rotational or random basis; It is binding Impartial Hearing – Impartial Hearing Officer Appeals – State level first

51. ADHD/ADD Hyperactivity Impulsivity Distractibility Issues to Consider Developmental Gender Bias Overly diagnosed/overly simplified Medication issues in Epilepsy

52. PDD Autism Rett’s Childhood Disintegrative Disorder Asperger’s PDD-NOS Wide variability in presentation

53. Learning Disabilities Specific Dyslexia, Dysgraphia, Dyscalculia Non-Verbal Learning Disabilities More General Gaps in abilities/IQ and achievement Developmental Track over time/different demands

54. Sensory Integration Organizing, integrating and interpreting sensory input in a variety of modalities including: touch, movement, body awareness, visual, and auditory information. Developmental Does it impact functioning? Overlaps and/or interacts with other diagnoses conditions

55. Auditory Processing Difficulties in processing orally presented information even though hearing is within normal limits Beware of “knee-jerk” label Audiologist needs to diagnose Age expectations – These skills develop between ages 5-7. Interventions/recommendations Overlap with other diagnoses

56. Recommendations School placement Therapies/Interventions Compensatory techniques and strategies Modifications in the Environment Accommodations/Expectations Assistive Technology Medication/Treatments Some sound good but may not help (e.g. tape recording lectures requires >2x to listen and transcribe; laptop in class – only if great/fast typist…)

57. Summary Need to incorporate all objective data, scores from testing, observations, outside therapists, history, emotional/personality variables, family, and school data in order to make well thought out decisions for children. Need to know rights and law as well.

58. Parents Know Best Trust your instincts Be involved / carry-over Educate yourselves (pros and cons of internet) Work closely with medical team Know your rights (Advocacy/Lawyers)