Pediatricians and the Management of Learning Disabilities/Differences

Pediatricians and the Management of Learning Disabilities/Differences Paul B. Yellin, MD, FAAP Interim Head, Student Success Clinical Services All Kinds of Minds Institute Clinical Associate Professor of Pediatrics NYU School of Medicine

What is the All Kinds of Minds Institute? • Not-for-profit institute • Founded in 1993 by Dr. Mel Levine (Professor of Pediatrics & Director of the Center for Development and Learning at the UNC School of Medicine) • Mission • To help students who struggle with learning measurably improve their success in school and life by providing programs that integrate educational, scientific and clinical expertise. • Programs • Schools Attuned • Student Success Services

Children Who Struggle in School • Depending upon the methodology and definition, the incidence of learning disabilities is generally reported to be in the range of 5-10%, sometimes as high as 15-18%. • Almost 25% of children experience school difficulties. • Based on longitudinal, population-based estimates, NICHD estimates that 20% of the population displays reading disability.

Other Considerations • Boys outnumber girls by 4:1, at least in part due to referral bias. • Causality is generally multi-factorial and rarely readily apparent. • Major impact on multiple aspects of child’s life.

School problems are by far the most common developmental problems (perhaps the most common problem in general) encountered by pediatricians

AAP Policy Statement: The New Morbidity Revisited-Pediatrics, 11/01 • “Reaffirms the Academy’s commitment to prevention, early detection, and management of behavioral, developmental, and social problems as a focus in pediatric practice.” • Addresses both increased frequency with which these issues are recognized and increased knowledge base facilitating more effective prevention, early detection, and management. • Includes school problems, such as learning disabilities and attention difficulties.

ADHD and LD • Significant co-morbidity between ADHD and reading disabilities (15-45%) • Co-morbid group demonstrates deficits of both single groups in additive fashion. • Emerging evidence of association between math disabilities and attention deficits. • When ADHD is diagnosed, there should be a high index of suspicion for other learning problems.

Basic knowledge and conceptual framework Medical and neurodevelopmental issues related to school performance Age and grade specific academic expectations Legal and regulatory aspects (IDEA) Community resources To get started, you need

Individuals with Disabilities Education Act (IDEA) • 1990 revision of Education For All Handicapped Children Act of 1975. • Re-authorized in 1997. • Modified by No Child Left Behind Act.

Fundamental Components of IDEA • Free Appropriate Public Education (FAPE) • Individualized Education Program (IEP) • Procedural Safeguards • Least Restrictive Environment (LRE)

FAPE • Special education and related services must be: • Provided at public expense • Under professional supervision • No charge to family • Meet standards of state education agency • Include preschool, elementary and secondary • Conformity with IEP • Designed to meet students individual needs

Individualized Education Program (IEP) • Written statement addressing 5 components: • Present level of performance • Annual goals • Specific special education and related services • Projected dates for initiation • Objective criteria and evaluation procedures and schedules • Developed by multidisciplinary team with precise knowledge of child’s needs. • Potential for pediatrician participation • Parents entitled to participate fully in development and implementation.

Overview of the Pediatrician’s Roles • Provide medical home. • Screening, surveillance, and diagnosis. • Referral. • Participation in assessment. • Counsel and advice. • Creation of IEP. • Coordinated medical services. • Advocacy. AAP Policy Statement-The Pediatrician’s Role in Development and Implementation of IEP…Pediatrics 1999;104:124-127.

Procedural Safeguards-Due Process Procedures • Protection for family and children against unilateral decisions by educational agency. • Implications for assessment process (i.e. multidisciplinary and multisourced) • Requirement for parental notification and consent. • Right to impartial hearing. • Right to appeal to courts. • Opportunity to examine all records pertaining to their children and to add corrections.

Least Restrictive Environment • To the maximum extent appropriate, children with disabilities are educated with children that are not disabled. • Special classes, separate schooling, or other removal from regular education environments only when nature and severity of disability is such that education in regular classes with supplementary aides and services cannot be achieved satisfactorily. • All school districts must have continuum of alternative placements available. • Requirements for LRE may conflict with FAPE. • Resolution based on best information available to determine

IDEA Definition of Learning Disability(Legal not Medical!!!!) • The term "specific learning disability" means a disorder in one or more of the basic processes involved in understanding or using language, spoken or written, which disorder may manifest itself in imperfect ability to listen, think, speak, read, write, spell, or do mathematical calculations. • DISORDERS INCLUDED- Such term includes such conditions as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. • DISORDERS NOT INCLUDED- Such term does not include a learning problem that is primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.

Other Common Definition • Severe discrepancy between ability and performance

Pediatric Perspective • School focus is eligibility for services • Appropriate vs. optimal • Pediatrician’s focus is the child and family • Determine reason for school problems • Develop intervention strategy that is optimal for the child

Medical History • Identify early risk factors and/or early signs of learning difficulties • Identify conditions associated with learning difficulties • Family History • Developmental History • Sleep and Nutrition History • Behavioral and emotional issues

Physical Examination • Height, weight, head circumference, BP • Assessment of overall physical and pubertal development • Screen for speech and hearing difficulties • Look for stigmata of systemic disorders • Chromosomal, phakomotoses, endocrinopathies • Explore any somatic complaints • Neurological Assessment

Key Elements of PE-Neurological • Soft signs • Common • Association with learning differences • Non-specific and rarely contribute to treatment • Signs of significant pathology • Rare • Important not to miss

Search for Soft Signs • Synkinetic (mirror) movements • Other associated movements (“overflow”) • Dysdiodochokinesis • Stimulus extinction • Motor impersistence • Choreiform movements • Lateral preference • Left-right discrimination

Roper Starch Worldwide Poll • Commissioned in 2000 by Emily Hall Tremaine Foundation • Surveyed a nationwide cross-section of 1,000 adults (age > 18 yo) and an additional sample of 700 parents with children < 18 yo • Provides important insights into attitudes and concerns about learning problems

Results of Roper Starch Poll • 40% had concerns that their children might have serious problems with learning or schoolwork. • 44% of these waited for signs of the difficulty to persist for > 1 year before acknowledging the problem. • Parents fear that being labeled as learning disabled will have a negative effect on their child’s self-esteem. • 63% of parents feel that children with LD view themselves as different and not as good as other children.

SOME OBJECTIONS TO BEING A LABELED PERSON • Labels oversimplify and diminish People • Labels may imply “If you’ve seen one, you’ve seen them all” • Labels can be pessimistic • Labels have inadequate implications for how to help someone • Labels imply we need to look no further to understand someone • Labels can become self-fulfilling prophesies

SOME MORE OBJECTIONS TO BEING A LABELED PERSON • Labels can imply you can only have 1 problem • Labels may suggest you’ll always be how you are now • Labels often have criteria that are vague & arbitrary • Labels can take over a person’s whole sense of who she is • Labels get used to justify questionable treatments • Labels suggest that variation is invariably a form of deviation

Rational Approach to Medical Assessment-Accardo, 1999. • Detailed history. • Comprehensive PE. • Functional neurodevelopmental assessment. • Performance of appropriate tests. -Pediatric Clinics of North America 1999;46:845-856.

AKOM Approach • Non-labeling, phenomenologic. • Identification of specific breakdown points that account for learning difficulties. • Interdisciplinary assessment resulting in neurodevelopmental profile. • Pediatrician, psychologist, learning specialist • Strengths and Weaknesses • Specific learning plans.

Conceptual Model of Learning and Productivity in School • Hierarchical • Four levels • Neurodevelopmental functions • Subskills, Knowledge and Strategies • Skills, Sophisticated Knowledge, and Approach to Learning • School-Related Outcomes

An example of a skill and its component subskills • Writing, a skill, is composed of several sub-skills: • Letter formation • Spelling • Mechanics (e.g. punctuation, capitalization) • Written language • Use of prior knowledge • Brainstorming (generating ideas) • Organization

Important Terms • Variation • Dysfunction • Disability • Handicap

Variation • Definition • An unusual pattern of style, strength, and/or weakness in one or more components of developmental function • Example • A strong vocabulary, very good verbal reasoning, but some weakness in processing lengthy complex sentences • Effects • Usually of little or no impact unless complicated by other factors or unusual expectations

Dysfunction • Definition • An pattern of developmental variation that significantly impairs performance in a particular developmental function • Example • A poor vocabulary, trouble finding words, and weakness of verbal memory-together thwarting overall linguistic skills • Effects • Variable, depending on severity, expectations, employment of compensatory strengths, and presence of other dysfunctions

Disability • Definition • One or more dysfunctions that result in poor performance on a particular type of task • Example • A language dysfunction associated with a reading disability • Effects • Variable, depending on the importance of the affected task and the age and social and/or educational setting of the child (e.g. a reading disability has more impact than a dancing disability)

Handicap • Definition • A disability that is uncompensated for and that compromises a critical area of performance • Example • A reading disability • Effects • Of high impact

Implications • Variations need not be a dysfunction, dysfunction need not create a disability and disability need not create a handicap • Implications are age and setting specific • Adults are able to practice specialties and avoid areas of weakness while children are required to be generalists • Disabilities that may not handicap adults are more likely to handicap children • Implications for self esteem and mental health • Implications for ultimate success and happiness

AKOM Approach • Non-labeling, phenomenologic. • Identification of specific breakdown points that account for learning difficulties. • Interdisciplinary assessment resulting in neurodevelopmental profile. • Pediatrician, psychologist, learning specialist • Strengths and Weaknesses • Specific learning plans.

Neurodevelopmental Functions-Eight Constructs • Attention • Language • Memory • Spatial Ordering • Temporal-Sequential Ordering • Neuromotor Function • Social Cognition • Higher Order Cognition

Elements of AKOM Learning Plan • “Demystification”- a process through which the child is taught all about his or her strengths and weaknesses using understandable words. • Bypass strategies, techniques designed to work around a student’s area of weakness. • Specific activities (interventions at the breakdown points) intended to try to strengthen the weak area of function. • Activities to strengthen strengths.

Why Demystification? • Students struggling in school often harbor fantasies about what’s “wrong” with them; very often their fantasies are much worse than the reality. • A student may believe she is pervasively defective; therefore, we need to put borders around her areas of dysfunction. • A student can feel more in control and motivated when, instead of a label, he comes to understand the highly specific breakdowns in learning that are thwarting his school success.

Why Demystification? • It is hard for a kid to work on an area of weakness if he doesn’t even know what it’s called. • A child can benefit from perceiving his weaknesses embedded in a context of strengths, as part of a profile of strengths and weaknesses - which everyone has. • A well-demystified student knows he has a problem, but it’s not so bad – thus sidestepping both denial and over-reacting.

Components of Demystification • DESTIGMATIZATION of the demystification • letting a child know she’s not being singled out; anyone can benefit from demystification • DELINEATION OF STRENGTHS • providing highly specific evidence of assets and comparing to other students • ENUMERATION OF WEAKNESSES or areas needing work on • using a small number of weaknesses stated before and after the listing • INDUCTION OF OPTIMISM • helping a student feel upbeat regarding the future (e.g., communicating it may be easier to be an adult than a kid) • ALLIANCE FORMATION • letting a student know that you intend to be available and helpful in the future (as a mentor and advocate)

Summary • Learning problems are extremely common and would benefit from the kind of comprehensive, pediatric approach applied to other chronic problems, like asthma and diabetes. • Every pediatrician should screen for school problems as an integral component of routine child care.

Pediatricians and the Management of Learning Disabilities/Differences