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Introduction contd …. 2

Introduction contd …. 2. Introduction contd …. 4. Steps towards progress: Addressing the ASD & NDD in Bangladesh. Disability issues received significant impetus through Bangladesh Persons with Disability Welfare Act 2001

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Introduction contd …. 2

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  1. Introductioncontd …. 2

  2. Introductioncontd …. 4

  3. Steps towards progress: Addressing the ASD & NDD in Bangladesh • Disability issues received significant impetus through Bangladesh Persons with Disability Welfare Act 2001 • Beginning of this decade Autistic children are screened and identified by the few trained parents of Autistic child • Institutionally ASD diagnosis CDC(SBK)- 2nd Health Sector Programe HNPSP (2008-2011). • 2010- Establishment of CNAC (IPNA-2015) • 2011- Dhaka hosted the first-ever Regional Conference • 2012-Formation of NAC, NSC and TGC and SCAPANND

  4. Steps towards progress: Addressing the ASD & NDD in Bangladesh contd…2 • 2013- Bangladesh tabled “Resolution 67/82” & WHO “Resolution • National Trust Act for Neurodevelopmental Disabilities, 2013 and Disabled Persons Right and Security Act 2013. • Disability Detection Survey by MoSW, a pilot screening project for developmental disorders in children through the community health clinics. • 2014 -Set Up Autism Cell under MoHFW to serve as secretariat of the NSCAND • “2016 Situation Assessment of Autism and Neurodevelopmental Disorders in Bangladesh” and “National Strategic Plan for Neurodevelopmental Disorders 2016-2021” • International Conference on Autism & NDDs, Bhutan, 19-21 April, 2017

  5. Prevalence of ASD in Bangladesh

  6. Disability Related Acts, Rules and Policies in Bangladesh • National Policy on Disability 1995 • National Action Plan on Disability 2006 • Disability Related Coordinated Special Education Policy 2009 • Disability Welfare Rules 2008 • Neuro Developmental Disability Protection Trust Act-2013 • The Rights and Protection of Persons with Disabilities Act-2013 • Neuro Developmental Disability Protection Trust Rule-2015 • The Rights and Protection of Persons with Disabilities Rule-2015

  7. Background of KOICA fellowship program • The KOICA fellowship program is one of KOICA’s main projects to support partner countries to secure human resources for their development. In 2012 Bangladesh was oriented to the fellowship program. Since then total 5 groups participated in KOICA’s multi-year competency enhancement fellowship program for ASD children in Bangladesh. • Objective: The primary objective of the fellowship program is to share Korea’s experience about important technical skills and knowledge as well as to build capacities for sustainable socio-economic development of the partner countries.

  8. Impact of such fellowship program Professionals from many organizations of different countries participating not only join but strengthen a co-operative network, promote the establishment of follow up projects and enjoy a general increase in overall status within international society. As implementation plans are tailored to the specific needs of the partner countries, this program help in spreading Korea’s development experience and systems for wider application while promoting diffusion at the local level. It is not simply delivering the seeds but creating a system in which those seeds may bud into flowers and spread more seeds.

  9. Overview of Health care System in Bangladesh

  10. Overview of Available Services For Diagnosis Purpose Only: • Upzilla Health Care Center • District Hospitals • Medical College Hospitals • Private medical college hospitals

  11. Overview of Available Services contd …2 For Both Diagnosis and Management Purpose: • Institute of Pediatric Neuro-disorder and Autism (IPNA), BSMMU • National Institute of Mental Health (NIMH) • Child Development Centre (CDC) at 15 Govt. medical colleges • National Institute of Neuroscience and Hospital • CRP (Centre for the Rehabilitation of the Paralysed) • ‘Proyash’ Institute for the Children with Special Needs

  12. Overview of Available Services contd …3 For the management Purpose: • Jatiyo Protibondhi Unnoyon Foundation (JPUF) • Society for the welfare of the Intellectually Disabled, Bangladesh. • Several Private organization like Autism Welfare Foundation (AWF), SWAC, Society for the welfare of the Intellectually Disabled (SWID), Autistic Children Welfare Foundation (ACWF), Beautiful Mind, Nishpap Autism Foundation, School For Gifted Children, William and Marry Taylor Inclusive School in CRP.

  13. MEJOR MINISTRIES CONCERNED WITH ASD & NDDs • Ministry of Social Welfare • Ministry of Health & Family Planning • Ministry of Education • Ministry of Primary & Mass Education • Ministry of Women & Children Affairs

  14. Ministry of health & family welfare 1. Advisory committee on Autism & Neuro-developmental disabilities • 10 member committee, headed by Ms. SaimaWazedHossain • Multi-sectoral plan, • Develop & design programmes, • Implementation strategies, • Identify needs & necessary resources. Cooperative & collaborative multi-ministerial approach and in coordination with experts & stakeholders.

  15. Ministry of health & family welfareContd …… 2 2.Autism & Neurodevelopmental disability Cell • Health sector 7th five year plan, • National strategic plan for Neurodevelopmental Disabilities 2016-2021 3. Institute for PaediatricNeuro-disorder & Autism • Early detection & intervention, • Training & research institute, • Specially focused on under privileged children

  16. Ministry of health & family welfareContd …… 3 4. National Institute of Neuro-science & Hospital • Neuro-degenerative, Neuro-metabolic & other neurological treatment; • Treatment & rehabilitation of autistic children; • Facility of genetic counseling. 5. Child Development Centre at 15 key medical college • Child physician, • Child psychologist • Child therapist, • Supporting staff.

  17. Ministry of social welfare • National Foundation for Development of the Disabled Persons( JatiyioProtibondhiUnnayan Foundation – JPUF ) ~Integrated Education Program in Special Schools for PWDs for providing education, training and rehabilitation. 2. Neuro-developmental Disorder Trust ~Early screening tool development ~Structural referral system formulation 3. National Centre for Special Education (NCSE) ~ B.S.Ed program for the teachers

  18. Ministry of social welfare Contd… 2 4. Directorate of Social Services a) Social Safety Net Program for PWDs ~Allowances for the PWDs ~Education Stipend Program for the Disable Student b) Disability Detection Survey Program ~To detect visible and invisible disabilities ~To register PWDs and provide ID cards;

  19. Other concerned Ministries ….. A. Ministry of Women & Children Affairs * Early Childhood Development B. Ministry of Primary & Mass Education • Early Childhood Education & Care • Inclusive Education C. Ministry of Education * National Academy for Autism & NDDs * Vocational & technical education

  20. Other Government initiatives and achievements • Annual celebration of World Autism Awareness Day, highlighted by the “Light It Up Blue” campaign • Incorporation of a chapter on autism in the National Curriculum • Incorporation of teaching guidelines in the primary school teacher’s manual • Training of 2,694 field officials of the Directorate of Primary Education on inclusive education • Development of the National Academy for Autism & NDDs (NAAND) underway • Development of a parent-training program by MoWCA underway • Development of training programs on IT skills by ICT Division specifically for persons with ASD

  21. The support of Shuchona Foundation • A not-for-profit, advocacy, research and capacity-building organization specializing in NDDs and mental health – established in 2015 by Saima Wazed Hossain • Provides technical support to the National Steering Committee and the National Advisory Committee for Autism & NDDs • Recent accomplishments: • Developed a module for training parents of children with autism • Provided technical support as a co-organizer for the 2015 Dhaka Conference on Disability & DRM • Generated awareness of NDDs among Members of Parliament • Produced a manual and delivered training on needs of persons with NDDs to Civil Service trainees • Partnered with ICI of UMass-Boston to develop:- • 2016 Situation Assessment of Autism & Neurodevelopmental Disorders in Bangladesh • National Strategic Plan for Neurodevelopmental Disorders 2016-2021

  22. Highlights from the National Strategic Plan Focused strategic sub-plans: • Coordinated mass awareness-building plan • Healthcare plan • Education plan • Employment plan • HR development plan • Use of technology plan • Expansion of IDSCs • Collaboration plan • Formation of sub-committees in NSCAND • Formation of a parliamentary committee for disability affairs • Financial reporting plan • Monitoring and evaluation plan

  23. CHALLENGES OF ASD & NDD • Challenges of identification: poor social awareness, lack of parental concern • Challenges of early intervention: poor understanding capacity, superstition, low socio-economic condition • Challenges with delivering education: affordability, limited number of schools, inadequate teaching tools, no such facilities in periphery of our country, minimal number of special educators & instructors • Challenges with inclusion in schools: social acceptability, inadequate teaching staff, unsuitable classroom environment, school settings

  24. Overview of IPNA Institute of PaediatricNeuro-disorder and Autism(IPNA) is a government initiative to establish a nationwide Paediatric Neurodevelopment and Autism related management, training and research centre in Bangladesh. The institute is located on the premises of Bangabandhu Sheikh Mujib Medical University (BSMMU) where a multidisciplinary and multi-agency team provides comprehensive and tertiary level services to children with disability and their families under one roof. In 2010, the first initiative in the government sector for ASD children in Bangladesh was Centre for Neuro-disorder and Autism(CNAC). Later in January 2015 it started its journey as Institute of Paediatric Neuro-disorder and Autism(IPNA).

  25. Overview of IPNA contd….2 • Number of cases of ASD received in the year 2016: 2,122 • Number of confirmed cases of ASD in 2016: 600 • Average service relationship period per ASD case: It depends on individual child’s improvement and ability. We follow up the child in every 3 months. Medical services for PwASD: • Screening tools- M-CHAT, M-CHAT-R • Diagnostic tools- DSM-5, ADCL, ADOS • Medications used for co-morbid conditions(eg:Antiepileptics, Resperidon, Aripiprazole) • Educational services for PwASD : • ABA • Speech and communication therapy • Occupational therapy • Sensory integration therapy • PECS

  26. Overview of IPNA contd….3 • Overview of mechanism of medical services at IPNA: Walk in clinic-> Suspected cases are sent to Multi agency autism assessment clinic where details history is taken. Then DSM-5 is used for diagnosis and medications are given for co-morbid conditions-> diagnosed cases are sent for interventions. • Overview of educational services at IPNA: By doing ADCL the risk of autism is assessed-> management is given according to the risk-> management is given by ABA, PECS, TEACCH, DTT. In addition to that the IEP and STO is used in the Day care centre. 1:1 care is given in the centre. 6 monthly home visit care is also provided by the Day care centre.

  27. Operational data • Number of cases of ASD received in the year 2017: 2,332 • Number of confirmed cases of ASD in 2017: 800 • Average service relationship period per ASD case depends on individual child’s improvement and ability; follow up the child in every 3 months.

  28. Patient History July 2017 to June 2018

  29. Autism School (Day Care) Home visit

  30. Challenges of IPNA • Inadequate space • Limited resources • Limited tools • Large number of patients

  31. National Institute of Neurosciences Hospital (NINH) • Neurology and allied department • Laboratory science department • Basic science department • Adult Neurology • Pediatric Neurology • Intervention Neurology • Electrophysiology • Physical medicine and rehabilitation • Anesthesia

  32. Autism Clinic in NINH

  33. Out Patient profile Ref: Year book 2017, NINS

  34. Neurodevelopment Clinic Ref: Year book 2017, NINS

  35. CHILD DEVELOPMENT CENTRES (CDCs) • 15 CDCs in Bangladesh. 25 more will established in the next 4 years. • Provides diagnostic and Intervention services for Children with ASD & NDDs • Comprehensive Psychological assessment and diagnosis of ASD & other NDDs using various tools including RNDA, ADOS, IBAS, DSM-V, ICD-10 • Running Clinic for Therapeutic Intervention for Autism, Speech-Language Communication, Motor activity • Weekly Epilepsy, Well-baby, Mental health Clinic

  36. CHILD DEVELOPMENT CENTRES (CDCs) contd…..2 • Multidisciplinary team comprising Child Physician, Child Psychologist and Developmental Therapist • 108810 children were served in the 15 CDCs (Aug 2009 – June 2017) • Total follow up visits amount to 266459 in the same period • On an average 250 children were served in a CDC every month. • Major challenges: workload, high rate of attrition among employees, shortage of Psychologist and shortfall in the effective referral mechanism.

  37. Functional Outcome at Intervention Clinics of 15 CDCs

  38. Centre for the Rehabilitation of the Paralysed (CRP)vision: To ensure the inclusion of girls and boys, women and men with disabilities into mainstream society

  39. CRP Paediatric Service at a GlanceInitial Screening by MDT(Physician, Physiotherapist (PT), Occupational Therapist (OT), Speech and Language Therapist (SLT) Inpatient Service • Combined Assessment (PT, OT, SLT) • Individual Treatment • Group Therapy Outpatient Service • Combined Assessment (PT, OT) • Individual Treatment (NDD & others) • Follow-up • Autism Group Therapy Associated Department: Prosthetics and Orthotics, CBR, Social Welfare, Metal and Wood Workshop, Special Seating Unit, Inclusive School

  40. Number of CP and Autism Patients Attending at CRP Savar 2017-2018 total ASD patient was- 976 and other Neurodevelopmental disorder- 324 number of patient was seen in individual basis.

  41. Number of Session at Paediatric Unit, CRP, Savar

  42. Ministry of Education Overview of Education System in Bangladesh: Disability Perspective Level of Education system Three levels (i) Primary (Class 1 to 8) (ii) Secondary (Class 9 to 12) and (iii) Tertiary. The total institutions in Bangladesh consists of some 150,000 institutions, 40 million students and a million teachers. Typical Qualifications of Service Provider Bachelor degree with B. Ed. or its equivalent degree

  43. Statistics about inclusion of students with disability 0.7 students with disability per educational institution

  44. Role of National Academy for Autism & NDDs • To introduce the children with Autism Spectrum Disorder (ASD) and Neuro-developmental disabilities (NDDs) in mainstreaming education system • To make the children with ASD and NDDs competent with vocational and others training • To provide residential facilities to students with ASD and NDD • To ensure proper ICT training facilities to children with ASD and NDDs • To create awareness among the teachers, guardians and other stakeholders; and • To provide training to the teacher for proper addressing of children with ASD and NDDs • To establish a special educational training institution to provide support at grass root level in Bangladesh • To provide the alternatives skills to ASD and NDDs children through sports, music, arts and occupational training.

  45. Overview of Autism Welfare Foundation • Vision: To create an inclusive environment where people with autism can live and work as fully participating members of their society. • Mission: To facilitate a barrier free environment; to empower families of persons with autism, and to act as a catalyst for change that will enable persons with autism to live as fully participating members of the society. • Services: • Diagnostic Assessments • Functional Assessments • Occupational and Sensory Assessment • Follow Up • Distant Package Program for Out Station Families

  46. Autism Welfare Foundation contd…2 Intervention Programs Running Education & Training Program: An Individualized Education Plan (IEP) is prepared on the basis of functional assessments. Currently, the School has Twenty five (25) sections in which around 160 children aged 3 to15 and above are placed in two shifts (morning & day) with 2:1 support depending on their abilities, needs, and chronological age.

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