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NEUROPSYCHOLOGICAL AND EDUCATIONAL NEEDS OF CHILDREN WITH EPILEPSY David H. Salsberg, Psy.D. Associate Director of Pediatric Psychology and Neuropsychology.

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Presentation on theme: "NEUROPSYCHOLOGICAL AND EDUCATIONAL NEEDS OF CHILDREN WITH EPILEPSY David H. Salsberg, Psy.D. Associate Director of Pediatric Psychology and Neuropsychology."— Presentation transcript:

1 NEUROPSYCHOLOGICAL AND EDUCATIONAL NEEDS OF CHILDREN WITH EPILEPSY David H. Salsberg, Psy.D. Associate Director of Pediatric Psychology and Neuropsychology Rusk Institute of Rehabilitation, NYU Langone Medical Center May 6, 2012

2 When to become concerned What professionals do you consult with What evaluations are available How to prepare What to do with the information Interventions Special Education or not Parents and Professionals Neuropsychological And Educational Needs Of Children With Epilepsy2

3 3 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.

4 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 4Neuropsychological And Educational Needs Of Children With Epilepsy

5 Always need to take into consideration any medical/central causes such as hearing, vision, trunk/muscle weakness, genetic, neurological… Epilepsy- incidences of learning or attention issues range from 20-70%, although unclear the incidence of those receiving interventions. Neuropsychological And Educational Needs Of Children With Epilepsy 5

6 Literature on Epilepsy Wide range of presentation and comorbid diagnoses Attention ADHD Executive Functioning Learning Differences Neuropsychological And Educational Needs Of Children With Epilepsy 6

7 How the Brain Works The brain is like a computer that controls the whole body. When something happens to the brain, any or all, or some of these areas can be affected to varying degrees. Physical Abilities Thinking/Learning Speaking Emotions Personality Behavior Neuropsychological And Educational Needs Of Children With Epilepsy 7

8 Goal of Neuropsychological Testing To provide a complete picture of a child’s cognitive and emotional functioning across many domains related to brain function. Concerned with learning and behavior in relation to a child’s brain Should be functional in perspective with clear recommendations made for treatment and interventions Neuropsychological And Educational Needs Of Children With Epilepsy 8

9 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 Neuropsychological And Educational Needs Of Children With Epilepsy 9

10 Testing Professionals  Psychologists School/Educational (Master’s, Doctorate) Clinical Ph.D., Psy.D.  Neuropsychologists Neuropsychological And Educational Needs Of Children With Epilepsy 10

11 Other Disciplines/Team  Pediatrician/Developmental Pediatrician  Neurology  Nursing  Psychiatry  Physiatry  Physical Therapy  Speech and Language Therapy  Occupational Therapy  Special Educators All have specific scopes of practice Neuropsychological And Educational Needs Of Children With Epilepsy 11

12 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 Neuropsychological And Educational Needs Of Children With Epilepsy 12

13 Factors Impacting Testing  Why referred?  Motivation/Attitude  Rapport  Time Frame of testing  Disabilities  Seizure status/hospital/medications  Need to know what each test measures/doesn’t measure  Age  Culture/Language  Qualitative information necessary with scores Neuropsychological And Educational Needs Of Children With Epilepsy 13

14 Pediatric Specialization  Experience  Rapport  Knowledge of educational system  Limits of overly specialized, diagnosis focused evaluations, clinics Neuropsychological And Educational Needs Of Children With Epilepsy 14

15 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) Neuropsychological And Educational Needs Of Children With Epilepsy15

16 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 Neuropsychological And Educational Needs Of Children With Epilepsy16

17 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 construct Neuropsychological And Educational Needs Of Children With Epilepsy17

18 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 Neuropsychological And Educational Needs Of Children With Epilepsy 18

19 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 Neuropsychological And Educational Needs Of Children With Epilepsy19

20 Picture Concepts 20Neuropsychological And Educational Needs Of Children With Epilepsy

21 Block Design 21Neuropsychological And Educational Needs Of Children With Epilepsy

22 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 - CAPD  Adds valuable information to IQ scores  Augmentative Communication 22Neuropsychological And Educational Needs Of Children With Epilepsy

23 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 23Neuropsychological And Educational Needs Of Children With Epilepsy

24 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 24Neuropsychological And Educational Needs Of Children With Epilepsy

25 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 25Neuropsychological And Educational Needs Of Children With Epilepsy

26 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 26Neuropsychological And Educational Needs Of Children With Epilepsy

27 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… Passage Comprehension from WJ-III vs. WIAT-II 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. 27Neuropsychological And Educational Needs Of Children With Epilepsy

28 Psychological and Emotional Concerns Depression Anger Anxiety PTSD/ASD Reality Testing Defenses Coping abilities/style Motivation Self-Esteem Impulsivity Disinhibition Low Frustration Tolerance Social Inappropriateness Emotional functioning needs to be given more concern before behavioral manifestation 28Neuropsychological And Educational Needs Of Children With Epilepsy

29 Family/Developmental issues Independence/Dependence Parents often more protective ‑ furthering these difficulties Fantasy of all-protective parent/safe world potentially impacted 29 Neuropsychological And Educational Needs Of Children With Epilepsy

30 Psychological Well being Self-esteem Social Family system/issues Educational opportunities and successes Locus of Control Not just a “diagnosis” Adaptive functioning – physical/ADL’s but also social/emotional 30Neuropsychological And Educational Needs Of Children With Epilepsy

31 Physical/Medical Hospitalizations/Medications Biopsychosocial Psychological Coping Developmental Family Issues Neuropsychological Learning Cognitive 31Neuropsychological And Educational Needs Of Children With Epilepsy

32 Issues for Child Physical/Medications Confusion Fear Self-esteem Missing school/activities Social issues / teasing Sibling issues 32Neuropsychological And Educational Needs Of Children With Epilepsy

33 Sibling’s Issues Wanting more attention than they can always receive Worrying when/if their sibling can get worse Feeling helpless that there's nothing they can do to make things better Anger Fear Separation anxiety 33Neuropsychological And Educational Needs Of Children With Epilepsy

34 Parenting Issues Encouraging strength and resilience Need to help convey sense of control – for aspects that the child can control Being supportive, nurturing and available For affected child, as well as for non-affected siblings – and for yourself 34Neuropsychological And Educational Needs Of Children With Epilepsy

35 Factors affecting coping INTERNAL Developmental Level/understanding Personality Prior coping mechanisms/strategies Other interests/activities EXTERNAL Family supports Peer supports An environment that promotes expression Resulting life circumstances 35Neuropsychological And Educational Needs Of Children With Epilepsy

36 What can parents/families do? Be open with your feelings Allow for appropriate expression Be honest Seek help when needed Balance between protection and over- protection Let child know you also take care of yourself 36Neuropsychological And Educational Needs Of Children With Epilepsy

37 For Siblings Give role / responsibility if and when appropriate and wanted Make separate special times Acknowledge before there is a problem – “squeaky wheel” Allow / validate feelings even if they are negative or not nice Set appropriate limits Be careful of speaking in front of them always 37Neuropsychological And Educational Needs Of Children With Epilepsy

38 Reactions of friends and family Feelings of helplessness Confusion Anger Guilt Fear Sadness People often want to help, but may get conflicting messages from the person, feel helpless and confused and may not know what to do. 38Neuropsychological And Educational Needs Of Children With Epilepsy

39 What can one do to help? Support: Be there for the child. Often, friends and family will feel a need to "problem solve" or fix the problem. However, physical presence and support are usually more valuable. Education: Educate yourself by attending classes, reading books, or talking to a professional. Communicate: Listen and allow the child to talk about their experience at his or her own pace. Do not minimize what the child is going through - even when well-intentioned Share your feelings honestly and openly and reassure the child of your love and concern. 39Neuropsychological And Educational Needs Of Children With Epilepsy

40 Do not focus solely on the medical: Follow the child’s lead on when to talk about it and when to take a break. Allow time for shared pleasant activities. Broaden social support network: This support may come from other friends and family members, religious institutions, support groups, or trained mental health professionals. 40Neuropsychological And Educational Needs Of Children With Epilepsy

41 Symptoms of stress Will depend on child/developmental level… Depression Anxiety Withdrawn Anger/fighting Mood/Behavior changes Eating/Sleeping changes Loss of interest in activities/motivation Changes in academic functioning 41Neuropsychological And Educational Needs Of Children With Epilepsy

42 Appropriate emotional reactions vs. symptoms of concern Degree of reaction How symptoms/reactions manifest or do not Duration How impacts everyday functioning 42Neuropsychological And Educational Needs Of Children With Epilepsy

43 Overall Behavioral Strategies Understanding/perspective/not personalizing Respect - - back/forth Give choices / control Use reinforcements > punishment Learn antecedents to problematic behavior Prevent/set up situation to minimize problems Need to figure out what they respond to/what has worked/hasn’t As get to know issues – “outsmart them” 43Neuropsychological And Educational Needs Of Children With Epilepsy

44 Adaptive Functioning  Activities of Daily Living  Measures: Vineland-2 ABAS-II  Observation  Interviews  Needed for diagnosis of Mental Retardation 44Neuropsychological And Educational Needs Of Children With Epilepsy

45 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. 45Neuropsychological And Educational Needs Of Children With Epilepsy

46 Learning Disabilities Specific Dyslexia, Dysgraphia, Dyscalculia Non-Verbal Learning Disabilities More General Gaps in abilities/IQ and achievement Developmental Track over time/different demands 46Neuropsychological And Educational Needs Of Children With Epilepsy

47 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 47Neuropsychological And Educational Needs Of Children With Epilepsy

48 Auditory Processing  Difficulties in processing orally presented information even though hearing is within normal limits  Beware or “knee-jerk” label  Audiologist needs to diagnose  Age expectations  Interventions/recommendations  Overlap with other diagnoses 48Neuropsychological And Educational Needs Of Children With Epilepsy

49 PDD Autism Rett’s Childhood Disintegrative Disorder Asperger’s PDD-NOS Wide variability in presentation 49Neuropsychological And Educational Needs Of Children With Epilepsy

50 ADHD/ADD Hyperactivity Impulsivity Distractibility Issues to Consider Developmental Gender Bias Overly diagnosed/overly simplified 50 Neuropsychological And Educational Needs Of Children With Epilepsy

51 Treatment Multi-disciplinary therapy (PT, OT, SP, psychology). Individual Psychotherapy Cognitive Remediation Family Support Group Support Community and School Support Ongoing Assessment Ongoing Communication Medication 51Neuropsychological And Educational Needs Of Children With Epilepsy

52 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…) 52Neuropsychological And Educational Needs Of Children With Epilepsy

53 Cognitive Rehabilitation Strategies based on mass practice and repetition (exercising the brain) In one study, many sessions of multi- component cognitive therapy resulted in limited change in overall intelligence improvement in sustained attention Some improvement in academic achievement Butler and Copeland Neuropsychological And Educational Needs Of Children With Epilepsy

54 Interventions School placement Accommodations Therapies – should be data driven OT PT Speech/Language Psychotherapy Nutrition/Homeopathy/Alternative approaches 54 Neuropsychological And Educational Needs Of Children With Epilepsy

55 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) 55Neuropsychological And Educational Needs Of Children With Epilepsy

56 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 56Neuropsychological And Educational Needs Of Children With Epilepsy

57 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. 57Neuropsychological And Educational Needs Of Children With Epilepsy

58 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. 58Neuropsychological And Educational Needs Of Children With Epilepsy

59 Identification/Development of an IEP Determination of eligibility Classification Program Recommendation Present Levels of Academic Performance Goals/Objectives Related Services 59Neuropsychological And Educational Needs Of Children With Epilepsy

60 Classification 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 60 Neuropsychological And Educational Needs Of Children With Epilepsy

61 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 61Neuropsychological And Educational Needs Of Children With Epilepsy

62 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 62Neuropsychological And Educational Needs Of Children With Epilepsy

63 Placement This is performed at the CSE meeting, except in some districts (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) 63Neuropsychological And Educational Needs Of Children With Epilepsy

64 School Placement Section 504 – Not CSE Public School General Education with related services Therapies Resource Room / Special Education Teacher Support Services (SETSS) Paraprofessional Inclusion /Co-teaching class 12:1 12:1:1, 8, 6…. NPS – approved schools Carter Funding 64 Neuropsychological And Educational Needs Of Children With Epilepsy

65 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 65Neuropsychological And Educational Needs Of Children With Epilepsy

66 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. And the Law 66 Neuropsychological And Educational Needs Of Children With Epilepsy

67 Parents Know Best Trust your instincts Be involved / carry-over Educate yourselves (pros and cons of internet) Know your rights (Advocacy/Lawyers) 67 Neuropsychological And Educational Needs Of Children With Epilepsy

68 Questions? 68 Neuropsychological And Educational Needs Of Children With Epilepsy


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