1. Good afternoon!

2. CHILD DEVELOPMENT and CHILDREN WITH DISABILITIES Brad D. Berman, MD Clinical Professor Pediatrics, University of California, San Francisco, USA Consultant to Ability Bhutan Society

3. CHILD DEVELOPMENT in BHUTAN

4. Child Development Child Development – the unfolding process of growth and maturation from fetus through adolescence CNS maturation Sequential that is orderly, timed and “predictable” Gesell A Interactions between biologic, social and environmental influences

5. Early Child Development Concepts 4 major domains: Sensory-motor (hearing, vision, gross, fine motor) Speech-language Cognitive Psychosocial/emotional Each domain is interrelated with the others Olysanya, B: JDBP 2011

6. WHAT IS DISABILITY?

7. International Definition of Disability: International Classification of Functioning, Disability and Health (ICF) Disability comes from an interaction between health and contextual factors – environmental and personal

8. International Definition of Disability: International Classification of Functioning, Disability and Health (ICF) Physicalimpariments Activity limitations Participation restrictions

10. WHAT IS CULTURE ? Socially transmitted behavior patterns, beliefs, institutions… (online Free Dictionary) Values Attitudes and beliefs Interpersonal behaviors

11. Determinants of child development Wegner, 2009 Society ChildFamily

12. SOCIO-ECONOMIC STATUS – IMPACT ON HEALTH Access to care and resources for maternal health, prenatal care Access to adequate postnatal health and monitoring Access to adequate health services, immunizations, preventive care Access to adequate nutrition

13. Hypothesized relationship between poverty, stunting, child development and school achievement Grantham-McGregor S, Lancet 2007 Download to PowerPointDownload to PowerPoint | Download all imagesDownload all images Figure 2

15. SOCIOECONOMIC STATUS – INFLUENCE ON EDUCATION Access to quality Early childhood/preschool, elementary, secondary education, university, vocational education Appropriate curriculum for all students – special education opportunities and needs Impact on individual skills – language, cognitive development

17. Bhutan National Survey 2010-2011 Prevalence of Children with Disabilities Sponsored by the Ministry of Education, National Statistics Bureau, UNICEF-Bhutan Two-tiered questionnaire process 11,370 children screened 10 Question Screen by MS Durkin Durkin MS, et al: J ClinEpidemol (48), 1995

18. TEN QUESTIONS SCREEN – MS Durkin, 1992 Compared with other children, did the child have serious delay in sitting, standing, walking? Does the child appear to have difficulty with hearing? Does the child speak at all? Does the child learn to do things like other children his/her age?

19. Bhutan National Survey 2010-2011 Prevalence of Children with Disabilities Estimated Prevalence of disabilities ages 2-9 years is 21.3% Mild disability 18.6% Moderate disability 2.1% Severe disability 0.7% Cognitive disabilities most frequent Motor and behavioral disability less frequent

20. Bhutan National Survey 2010-2011 Children with Disabilities Estimated 1:1 ratio of male/female (most international studies describe 3:1 ratio) Higher prevalence of disability in rural (23.1%) compared to urban (14.1%) setting  Higher prevalence of disability amongst families with lower level of maternal education

22. CAUSES OF NEURODEVELOPMENTAL DELAY IN CHILDHOOD Infections – Acute e.g. meningitis, encephalitis – Chronic e.g. parasitic, TB Sensory impairments – visual, hearing Thyroid disorders – hypo, hyperthyroidism Seizure disorders Medications e.g. seizure medications Head trauma

24. NUTRITIONAL FACTORS IN NEURODEVELOPMENT Iron deficiency – childhood effects can include anemia, attention and learning challenges, motor, social-emotional development Protein deficiency – effects muscle mass, neurologic-brain development, hair growth, others Micronutient deficiency -  Vitamin A, D, C, B complex, B12, Calcium, Zinc, others

25. PREMATURITY

26. CAUSES OF PREMATURE BIRTH Lack of adequate prenatal care Poor nutrition during pregnancy Difficulty with access to appropriate health care Adverse effects of low socioeconomic status Maternal infections Young maternal age < 18 years old

27. ASSESSMENT OF CHILD WITH NEURODEVELOPMENTAL DELAY History and interview with parent - Direct face-to-face interview - Use of questionnaires - Must take into account family language, culture Physical examination Observation of the child: ALWAYS!

29. ASSESSMENT OF CHILD WITH NEURODEVELOPMENTAL DELAY Neurodevelopmental evaluation - gross motor - fine motor - receptive language - expressive language - learning skills (if appropriate) - awareness and response to environment

30. ASSESSMENT OF CHILD WITH NEURODEVELOPMENTAL DELAY Use of screening questionnaires – Several available; main issue is cultural sensitivity and lack of available norms for Bhutan – Two functions for questionnaires: Guide single patient evaluation Monitor or refer for assessment

31. RNDA – Rapid Neurodevelopmental Assessment A structured tool to ascertain rapidly neurodevelopmental status of children who are younger than 2 years has been developed and validated for use by multidisciplinary health professionals “structured, reliable, valid tool” NZ Khan, MD, PhD, et al: Pediatrics, March 2010

33. ASSESSMENT OF CHILD WITH NEURODEVELOPMENTAL DELAY- MEDICAL TESTS Evaluate for hearing/vision when indicated Medical laboratory testing: Primary - CBC, iron, ferritin, metabolic panel, thyroid, lead, urinalysis, tests for infection as needed Medical laboratory testing: Secondary – Genetic testing, amino acid profile, organic acid profile, CPK, ammonia – MRI – EEG (when available)

35. PROPOSED INTERVENTIONS for CHILDREN and DISABILITIES National Policies – role of pediatricians here! Investment in maternal and child health is an investment in labor force and economic well- being (GNH) Improve nutrition, basic health services Psychosocial stimulation (remember culture?) Reduce violence to women and children!!!

36. PROPOSED INTERVENTIONS for CHILDREN and DISABILITIES Multi-sectoral and transdisciplinary National policies - role of pediatricians here! Holistic – culturally meaningful and relevant – blend traditional child-rearing practices with “evidence-based approaches” – blend traditional health practices with “modern medicine”

37. PROPOSED INTERVENTIONS FOR CHILDREN and DISABILITIES Systematic developmental surveillance and screening Mandatory newborn laboratory screening Mandatory hearing screening 0-3 mos Promote early childhood education (C4CD, ECCD) model Ensure adequate and healthy nutrition

39. CHILD DEVELOPMENT INTERVENTION SERVICES in BHUTAN JDW National Referral Hospital – Neonatal follow-up clinic – Child Development clinic – Pediatric Physiotherapy Dr. Yoriko, Dr. Kinley, Dr. Mimi, Dr. Tashi, Karma Lhaki, PT

40. CHILD DEVELOPMENT INTERVENTION SERVICES in BHUTAN Ability Bhutan Society – Ms. Beda Giri, PT, Executive Director DrakTsho– Ms. JigmeWangmo, Director Special Education Units in Government Schools – Chief Kinley, Director of Special Education services, Ministry of Education

41. CHILD DEVELOPMENT INTERVENTION SERVICES in BHUTAN ECCD preschool program – ages 3-5 years (Early Childhood Care and Development – UNICEF-Bhutan, Special Education Division Ministry of Education) C4CD Program – ages 0-2 years (Care for Child Development – WHO, UNICEF-Bhutan, Ministry of Health)

42. PROPOSED INTERVENTIONS for CHILDREN and DISABILITIES Need for trained professionals in child health and development Support and involvement for mothers pre- natal forward… Development and on-going support of early intervention programs and education Trans-sector collaboration

44. It takes a village: Professionals with challenged learners Teachers - educators Psychologists – neuropsychologists Educational specialists Speech-language pathologists Occupational therapists Counselors/social workers Psychiatrists Developmental-behavioral pediatricians