PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES

1. PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

2. DEVELOPMENTAL DELAY • 40% DELAY IN A SINGLE DEVELOPMENTAL AREA OR 25 % DELAYS IN 2 OR MORE AREAS GROSS MOTOR, FINE MOTOR, COGNITION, SPEECH / LANGUAGE, PERSONAL / SOCIAL, OR ACTIVITIES OF DAILY LIVING • GLOBAL DELAY :SIGNIFICANT DELAY IN 2 OR MORE DEVELOPMENTAL DOMAINS • 15-18% OF CHILDREN IN U.S. • COMMON CLINICAL PROBLEM IN PEDIATRICS(PREVALENCE OF 15-20%) • PCP ENCOUNTERS DD OR BP IN 1 OF EVERY FOUR PATIENTS VISITS • RELATIVE INCREASE OVER THE PAST 2 DECADES GLASCOE FP. PED 2002, PEDS IN REV 2000. SHEVELL MI. J OF PED 2000

3. FACTORS THAT INFLUENCE THE RELATIVE INCREASE IN DD AND BP • MORE USE OF IMMUNIZATIONS AND ANTIBIOTICS • PARENTS AWARNESS AND CONCERNS • AVAILABILITY OF FREE PUBLIC DEVELOPMENTAL PROGRAMS FOR REFERRAL • IMPROVEMENT OF THE SURVIVAL RATE IN VLBW INFANTS

4. GOALS IN THE EVALUATION OF DEVELOPMENTAL DELAY • EARLY IDENTIFICATION • EARLY REFERRAL TO EIP • DETERMINATION OF AN ETIOLOGIC DIAGNOSIS WHICH WOULD PROVIDE INFORMATION: PATHOGENESIS *CRTITICAL QUESTIONS PROGNOSISMOST OFTEN POSED TO THE RECURRENCE RISKSCLINICIAN BY THE FAMILIES SPECIFIC MEDICAL INTERVENTIONS

5. GOALS IN THE EVALUATION OF DEVELOPMENTAL DELAY DETERMINATION OF AN UNDERLYING ETIOLOGY SERVES TO LIMIT ADDITIONAL UNNECESSARY TESTING AND EMPOWERS THE FAMILY BY PROVIDING A BETTER UNDERSTANDING OF THE CHILD’S PROBLEM AND THE REASON(S)FOR IT

6. IDENTIFICATION OF THE CHILD WITH POTENTIAL DELOPMENTAL DELAY PRENATAL POSTNATAL HISTORY PRESENT FAMILY

7. IDENTIFICATION OF THE CHILD WITH POTENTIAL DELOPMENTAL DELAY • PHYSICAL EXAMINATION DYSMORPHIC FEATURES ABNORMAL NEUROLOGICAL EXAM GROWTH DELAY • PARENTAL CONCERNS

8. THE ROLE OF THE PARENTS IN THE DECTECTION OF DEVELOPMENTAL AND BEHAVIORAL PROBLEMS • STRONG RELATIONSHIP BETWEEN PARENTS ‘ CONCERNS AND CHILDREN’S DEVELOPMENTAL STATUS (Glascoe FP,Peds In Rev 2000. Chis PJ, Peds Rev 2000) • FINE MOTOR , LANGUAGE, COGNITIVE AND SCHOOL SKILLS : HIGH LEVELS OF SENSITIVITY (Glacoe FP, Peds 95, 97) • GROSS MOTOR SKILLS AND MEDICAL / HEARING STATUS : HIGHLY RELATED TO DEVELOPMENTAL PROBLEMS (Glascoe FP, Clin Pediatr 91, 94)

9. THE ROLE OF THE PARENTS IN THE DECTECTION OF DEVELOPMENTAL AND BEHAVIORAL PROBLEMS • 87% CHILDREN WITH ADHD : CONCERNS RELATED TO IMPULSIVENESS, INATTENTION, OR OVERACTIVITY (Mulhern et al, Am J Dis Child. 93) • CONCERNS RELATED TO CHILDREN’S HEARING : HIGHLY SENSITIVE INDICATOR OF HEARING PROBLEMS ( Glascoe FP, Ped 91. Diamond K , J Div Early Childhood 87) • ABSENCE OF CONCERNS OR CONCERNS IN OTHER AREAS ( SEL-HELP OR SOCIALIZATION) : CORRELATE WITH CHILDREN WITHOUT ANY PROBLEMS (Glascoe FP, Am J Dis Child 89)

10. THE ROLE OF THE PARENTS IN THE DECTECTION OF DEVELOPMENTAL AND BEHAVIORAL PROBLEMS • PARENTAL MENTAL HEALTH : STRONG CONTRIBUTOR (Dulcan MK et al. J Am Acad Child Adolesc Psychiat 90. Glascoe FP, Dworking PH. Pediatrics 95) • ADVERSE EFFECTS ON CHILDREN’S HEALTH • PARENTAL DEPRESSION, ANXIETY OR DISTRESS • ADDICTION • PARENTAL HEALTH ISSUES (Riley AW et al.Med Care 93) • SOCIOECONOMIC ISSUES • PARENTAL LEVEL OF EDUCATION AND EXPERIENCE(PARENTS COMPARE THEIR CHILDREN TO OTHERS) (Glascoe FP et al. Clin Pediatr 1991,1994. Pediatrics 91)

11. THE ROLE OF THE PCP IN THE DECTECTION OF DEVELOPMENTAL AND BEHAVIORAL PROBLEMS • CLINICAL JUDGEMENT • DETECTS < 30% OF CHILDRENWITH M.R., LEARNING DISABILITIES, LANGUAGE IMPAIRMENTS (GLASCOE FP, PED REV 2000) • IDENTIFIES < 50% OF CHILDREN WITH SERIOUS EMOTIONAL AND BEHAVIORAL DISTURBANCES • THE USE OF VALIDATED SCREENING TOOLS (<25%) • SENSITIVITY TO PSYCHOSOCIAL PROBLEMS 70 – 80% • SPECIFICITY TO NORMAL DEVELOPMENT 70 – 80% • 20 – 30% FALSE + IDENTIFICATION  OVER-REFERRAL(BELOW AVERAGE: INTELECTUAL, LANGUAGE OR ACADEMIC SKILLS)

12. THE ROLE OF THE PCP IN THE DECTECTION OF DEVELOPMENTAL AND BEHAVIORAL PROBLEMS AMERICAN ACADEMY OF PEDIATRICS‘ COMMITTEE ON CHILDREN WITH DISABILITIES RECOMMENDS THAT PEDIATRICIANS USE VALIDATED SCREENING TOOLS AT EACH HEALTH SUPERVISION VISIT

13. USE OF VALIDATED SCREENING TOOLS BY THE PCP • DIFFICULT TO COMPLY WITH AAP RECOMMENDATIONS • MINIMAL REIMBURSEMENT • YOUNG PATIENTS ‘ LIMITED COMPLIANCE • TIME CONSTRAINTS • CONCERNS ABOUT ACCURACY AND LENGTH OF WELL-KNOWN SCREENING TOOLS • INCONSISTENT HEALTH SUPERVISION • ADMINISTRATION OF SCREENING TOOLS ONLY TO SYMPTOMATIC PATIENTS

14. USE OF VALIDATED SCREENING TOOLS BY THE PCP • THE MOST EFFECTIVE TOOLS ARE THOSE THAT RELY ON PARENTAL REPORTS ( DESCRIPTIONS OF CHILDREN’ SPECIFIC SKILLS) • ELIMINATE THE NEED FOR OBTAINING CHILDREN’S COOPERATION AND EFFORT • PROVIDE A THOROUGH SAMPLING OF CHILDREN’S SKILLS • HAVE FLEXIBLE ADMINISTRATION METHODS : • INTERVIEWS • OVER THE TELEPHONE • SENT HOME IN PREPARATION FOR A FOLLOW UP VISIT • SELF-ADMINISTERED IN WATING ROOMS

15. USE OF VALIDATED SCREENING TOOLS BY THE PCP • MANY TOOLS ARE PUBLISHED IN SPANISH AND OTHER LANGUAGES • SOME HAVE OPTIONS FOR DIRECTLY ELICITING SKILLS FROM CHILDREN WHEN COMMUNICATION BETWEEN PARENT AND PROVIDER IS PROBLEMATIC • MANY STANDARDIZED QUESTIONAIRES ARE BRIEF, EASY TO READ, SCORE AND INTERPRET

16. USE OF VALIDATED SCREENING TOOLS BY THE PCP COMPARISONS OF PARENTS ‘ REPORTS WITH REPORTS BY OTHERS ARE VERY HELPFUL FOR ASSESSING THE CROSS-INFORMANT CONSISTENCY OF PROBLEMS ( TEACHERS, OTHER PARENT, ADOLESCENTS, SUBSPECIALISTS)

17. DEVELOPMENTAL AND BEHAVIORAL SCREENING TESTS CHILD DEVELOPMENTAL INVENTORIES PARENTS’ EVALUATIONS OF DEVELOPMENTAL STATUS (PEDS) * 3-72 MO. THREE SEPARATE INSTRUMENTS EACH 60 YES-N0 DESCRIPTIONS 10 MINUTES . Se > 75%, Sp 70% BIRTH – 8 Y 10 QUESTIONS IDENTIFIES WHEN TO REFER, SCREEN, REASSURE OR MONITOR MORE VIGILANT. 2 MINUTES Se 74-79%, Sp 70-80% 612-929-6220 www.pedstest.com 615-226-4460 BEHAVIORAL/EMOTIONAL CHILD BEHAVIOR CHECKLIST * 1 ½ - 18 Y 138 ITEMS. 20 – 25 MINUTES PROFILE OF BEHAVIORAL DEVIANCY AND SOCIAL COMPETENCE. COMPUTER SCORE RECOMMENDED. DIFFERENT LANGUAGES 2 ½ - 11 Y 35 SHORT STATEMENTS OF COMMON BEHAVIOR. 7 MINUTES Se 80%, Sp 86% www.ASEBA.org 802-656-8313 800-331-8378 PED REVIEW 2000 & 2002

18. DEVELOPMENTAL AND BEHAVIORAL SCREENING TESTS TEACHER REPORT FORM * SOCIAL ENVIRONMENT INVENTORY 2 – 16 Y 138 ITEMS. 20 – 25 MINUTES BASED ON CBCL 5 – 10 Y 35 ITEMS. 10 MINUTES IDENTIFICATION OF FAMILY ‘ STRESSORS YOUTH SELF-REPORT * CHILDREN’S DEPRESSION INVENTORY 11- 18 Y 112 ITEMS. 20 – 25 MINUTES BASED ON CBCL REQUIRES 5TH GRADE READING LEVEL 7 -16 Y. 10 MINUTES 27 ITEMS. SELF-REPORT OF SX NOT EASILY OBSERVED BY PARENTS UNRELIABLE < 10Y DENVER DEVELOPMENTAL SCREENING TEST II BIRTH – 6 Y. 125 TASKS. PERSONAL-SOCIAL. FINE-MOTOR-ADAPTIVE.LANGUAGE GROSS MOTOR. TEST BEHAVIOR ITEMS VALUABLE IN SCREENING ASYMPTOMATIC AND HIGH RISK CHILDREN COMPARE A GIVEN CHILD’S PERFORMANCE TO OTHER CHILDREN SAME AGE PED REVIEW 2000 & 2002

19. THE ROLE OF THE PCP IN THE DECTECTION OF DEVELOPMENTAL AND BEHAVIORAL PROBLEMS • SCREENING TOOLS ARE NOT DIAGNOSTIC • FURTHER EVALUATION IS MANDATORY IF CONCERN IS RAISED BY THE RESULTS OF A SCREENING INSTRUMENT • IF THE PCP IS UNCOMFORTABLE ADMINISTERING A STANDARDIZED SCREENING TOOL, HE/SHE SHOULD REFER THE CHILD TO A DEVELOPMENTAL SPECIALIST OR PSYCHOLOGIST • IF THE EVALUATION REVEALS THAT DEVELOPMENT IS WNL, ONLY THEN THE FAMILY COULD BE REASSURED THAT THERE IS NOT CONCERN

20. THE VALUE AND AVAILABILITY OF EARLY INTERVENTION PROGRAMS SUSPICIOUS OF DELAY OR ESTABLISHED CONDITIONS ASSOCIATED WITH HIGH PROBABILITY OF RESULTING IN DELAY - genetic disorders - metabolic disorders -CNS abnormalities and insults -sensory impairments -attachment disorders -premature infant < 1500 grs -neonatal asphyxia IDENTIFICATION OF DEVELOPMENTAL DELAY EFFECTIVE BECAUSE DEVELOPMENT IS MALLEABLE AND READILY AFFECTED BY THE ENVIRONMENT EARLY INTERVENTION PROGRAM IT DOES NOT REQUIRE PARENTAL CONSENT FEDERAL AND STATE MANDATED FEDERAL REQUIREMENT PART C, PUBLIC LAW 99-457 INDIVIDUALS WITH DISABILITIES EDUCATION ACT ( IDEA ) COMPREHENSIVE MULTIDISCIPLINARY EVALUATION DESIGNED TO MEET THE NEEDS FOR CHILDREN FROM BIRTH TO THREE CHILDREN 3 – 22 Y REFER TO CHILD FIND AT THE FL DIAGNOSTIC AND LEARNING RESOURCES SYSTEMS (FDLRS) MIAMI DADE COUNTY PUBLIC SCHOOLS GLASCOE FP PED REV 2000. McCARTON C. PED 98

21. THE VALUE AND AVAILABILITY OF EARLY INTERVENTION PROGRAMS TEACH MOTHERS TO INTERACT AND COMMUNICATE BETTER WITH THEIR CHILDREN PROVIDE INFORMATION TO PARENTS ON CHILD MANAGEMENT AND DEVELOPMENT PROVIDE APPROPRIATE EXPECTATIONS FOR CHILDREN AND GENERAL SOCIAL SUPPORT ENHANCE THE CHILD ‘S INTELECTUAL LANGUAGE AND SOCIAL COMPETENCE EIP PLACE CHILDREN IN DEVELOPMENTALLY ENRICHING SETTINGS REMOVE EXTERNAL RISK FACTORS OPTIMIZE THE ABILITIES OF THE FAMILIES TO MEET THE SPECIAL NEEDS OF THEIR CHILDREN PROVIDE CONTINOUS POSITIVE REDIRECTION AND FOCUSED BUILDING SKILLS TRAIN PARENTS IN RESPONSIVENESS AND EFFECTIVENESS THE BENEFITS OF EIP CLEARLY DEPEND ON EARLY DETECTION AND EARLY REFERRAL PED 96, 95, 97, 2001. PED REV 2000 & 2001

22. SUMMARY OF FEDERAL LAWS IMPACTING EARLY INTERVENTION SERVICES • Public Law 93-112, Section 504 of the Rehabilitation Act: Discrimination against people with disabilities when offering services is prohibited . ( 1973 ) • Public Law 94-142: Education for All Handicapped Children Act ( Renamed Education of the Handicapped Act { EHA }. All children have the right to a free and an appropriate public education. ( 1975 ) • Public Law 99-457, Part H ( Added to EHA ). Birth to Three services should be equal in all states and counties ( 1986 ).

23. SUMMARY OF FEDERAL LAWS IMPACTING EARLY INTERVENTION SERVICES • Americans with Disabilities Education Act : in areas of public services, discriminatory practices against individuals with disabilities by employers is prohibited. EHA is renamed the Individuals with Disabilities Education Act ( IDEA). ( 1990 ) • IDEA is revised ( IDEA-R). Part H is renamed Part C which outlines a national program to assist each state in establishing a system of services for children with developmental delays from Birth to Three years and their families. ( 1997 )

24. IDENTIFICATION OF THE CHILD WITH POTENTIAL DELOPMENTAL DELAY HISTORY PHYSICAL EXAMINATION PARENTAL CONCERNS VALIDATED SCREENING TOOLS REFERRAL TO EIP JUDICIOUS LABORATORY TESTS AND NEUROIMAGING STUDIES

25. IDENTIFICATION OF THE CHILD WITH POTENTIAL DELOPMENTAL DELAY • DETERMINATION OF AN ETIOLOGIC DIAGNOSIS HAS SIGNIFICANT IMPLICATIONS WITH RESPECT TO : PATHOGENESIS *CRITICAL QUESTIONS MOST OFTEN POSED PROGNOSISTO THE CLINICIAN BY THE FAMILIES RECURRENCE RISKS SPECIFIC MEDICAL INTERVENTIONS • SPECIFIC LABORATORY TESTING SHOULD BE INDIVIDUALIZED Majnemer A., Shevell M. J of Ped 95

26. ETIOLOGIC YIELD OF YOUNG CHILDREN WITH GLOBAL DEVELOPMENTAL DELAY 21.7 % SUSPECTED DX BY REF PCP 47.4% INVESTIGATION ALONE PROVIDED THE DX 18.4% INFORMATION FROM HX AND P/EX SHEVEL MI. J OF PED 2000. MAJNRMER A. J OF PED 95

27. IDENTIFICATION OF THE CHILD WITH POTENTIAL DELOPMENTAL DELAY CBC KARYOTYPE CBG FRAGILE X LACTATE EEG AMMONIA AUDITORY BRAIN-STEM POTENTIALS SERUM AA SOMATOSENSORY EVOKED POTENTIALS URINE OA COMPUTED TOMOGRAPHY TFT’S MAGNETIC RESONANCE IMAGING LFT’S LEAD LEVELS REFER TO SUBSPECIALISTS Filipek PA, Accardo PJ et al. Neurology 2000. Shevell MI , Majnemer A. J of Ped 2000.

28. ROLE OF THE PEDIATRICIANS IN FAMILY-CENTERED EI SERVICESAAP COMMITTEE ON CHILDREN WITH DISABILITIES BY PROVIDING LEADERSHIP, PCP CAN HELP SET THE STANDARD OF CARE IN THEIR COMMUNITIES FOR CHILDREN WITH DISABILITIES OR THOSE AT RISK OF DEVELOPMENTAL DELAYS AN ENVIRONMENT SHOULD BE CREATED IN WHICH THEPHYSICIAN, FAMILY , AND OTHER SERVICE PROVIDERS WORK TOGETHER IN A CARING, COLLEGIAL, AND COMPASSIONATE ATMOSPHERE THAT ENSURES THAT EIP ARE OF HIGH QUALITY, ACCESSIBLE, CONTINOUS, COMPREHENSIVE AND CULTURALLY COMPETENT PEDIATRICS 1996 & 2000.