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Autism & InclusionWhat is Available ?
Services for Children with Autism and their families in Malaysia
Dr Wong Woan YiingPresident NECIC
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Where to find help?
• Since Eric was two years old, Mrs Lim has noticed that he has not been behaving like other kids. She has been to her local family doctor and nearby Klinik Kesihatan, but they have reassured her that “boys are like that “
Dr Wong Woan Yiing NECIC
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When should parents be concerned ?
RED FLAGS1. Not able to speak 6 clear words with
meaning at 18 months of age2. No response to name No gesturing by
12 months3. Not able to walk independently at 18
months of age4. Not able to read and write after 1‐2 years
of kindergarten
Dr Wong Woan Yiing NECIC
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• Find Someone who would listen to your concerns—Parents are usually Right
• Help—MOH & Private sector – Family medicine physicians– Paediatricians– Psychologists
Dr Wong Woan Yiing NECIC
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Ministry of Health : Early Detection• Early Detection falls within purview of MOH
– 2012 ‘Health Record for Baby and Child (0 –6years) for all children
– Specific development screening tests M‐CHAT (Modified Checklist for Autism in Toddlers) at 18 months & at 3 years.
Dr Wong Woan Yiing NECIC
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M‐Chat
• A series of Questions to identify those children at risk and referred for confirmation– while the health monitoring programme is available to all parents, it may not be easily accessible by the urban poor and those in rural areas.
– Adherence to the monitoring programme is not compulsory,
– the effectiveness of the programme depends on the vigilance, proper implementation and follow‐up by parents, caregivers, private medical institutions, state health departments and individual health centres
Dr Wong Woan Yiing NECIC
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After given the diagnosis
• Mrs Lim is feeling lost and confused.
Dr Wong Woan Yiing NECIC
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Services Resources
Dr Wong Woan Yiing NECIC
• Perak/Sarawak• Malaysian Care • (www.malaysiancare.org)
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Hospital Based Rehabilitation Services
• Audiology• Speech therapist• Occupational Psychologist• Psychologist
Dr Wong Woan Yiing NECIC
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Speech therapy services (MASH 2017)Private KKM NGO University
Kedah 1
Penang 6
Terengganu 1
KL/Selangor/Putrajaya
50 3MOE (1)
2 13
Perak 3 3
Pahang 1
Kelantan 1
Melaka 3
NegeriSembilan
1
Johore 4
Sarawak 1
Sabah 4 1 1Dr Wong Woan Yiing NECIC
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Dr Wong Woan Yiing NECIC
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Dr Wong Woan Yiing NECIC
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Child diagnosed at 3 years old
Kuala Lumpur• Diagnosis at Private facility• Speech therapy at another
private medical centre weekly therapy
• Occupational therapist at PJ fortnightly
• Psychologist at Putrajaya irregular
• ABA therapy
Grik• Diagnosis at KKM facility• Speech therapist at KKM• ( Block therapy—fortnightly
for 12 weeks and then monthly for 12 weeks )
• Occupational therapy KKM(doesn’t have any follow up work )
Dr Wong Woan Yiing NECIC
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Problems in Delivery of Health services
• Limited Awareness amongst Medical Practitioners– Doctors are often unaware of early symptoms of autism and often dismiss parents’ concerns
– Many specialists lack skills to adequately assess HF ASD
– There is a serious lack of educational psychologists, developmental paed, community paed and othere trained professionals to aid in assessment
Dr Wong Woan Yiing NECIC
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Problems in Delivery of Health services
• Waiting lists are typically long– Smilarly long waiting list for hospital based therapy
– Family has little control over the timing and frequency of these visits
– Even with private health providers, parents reported similar difficulties in access
Dr Wong Woan Yiing NECIC
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• “I’ve given up on taking them for hospital visits. My children can’t handle crowds, and they can’t handle waiting for a long period of time, so it is very difficult to keep the appointments”
• “It’s very difficult to find parking and I can’t take public transport with these children”
• “On top of that, I could only get appointments once in 2 months “
• “Sometimes I would come all the way only to be told that the therapist went for meetings”
Dr Wong Woan Yiing NECIC
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• Mrs. Lim has been informed of the importance of Early Intervention program…How to do it ? Where to go ?
Dr Wong Woan Yiing NECIC
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Guidelines :What to look for in early intervention for ASD
raisingchildren.net.au
• Family focused– includes family members & provides families with support and guidance.
• Well structured interventions– staff who are specially trained– develops an individual plan for each child & reviewed and monitored regularly
– is highly structured, well organised, regular and predictable
• Based on good evidence.Dr Wong Woan Yiing NECIC
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Early Childhood Care Education
• Childcare /Taska (0‐4 years ) MWFCD
• KEMAS ( Ministry of Rural & Regional Development)• PERPADUAN Preschool (Department of National Unity & Integration)
• Prasekolah (MOE)
• Religious Bodies• Private Sectors• Salmah Bt Jopri Special Ed Division MOE Nov 2016
Dr Wong Woan Yiing NECIC
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Pusat Perkhidmatan Pendidikan Khas (3PK)
• pusat khidmat setempatyang menyediakanperkhidmatan sokongan
• 13 available• Putrajaya, Kedah, Pinang, Perak, Perlis, Selangor, Melaka, Johore, Kelantan,Terengganu, Pahang,Sabah, Sarawak
Dr Wong Woan Yiing NECIC
Salmah Bt JopriSpecial Ed DivisionMOE Nov 2016
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Early Childhood Care Education
• Many preschools or childcare centres operators are being approached by parents to care and educate their special needs children.
• There is a general complain of ‘do not know where to refer to’, and ‘do not know what to do with these children’.
Dr Wong Woan Yiing NECIC
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Services Resources
Dr Wong Woan Yiing NECIC
• Perak/Sarawak• Malaysian Care (www.malaysiancare.org)
• Inclusion training for local Childcare services
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Training on Inclusion
• NECIC is developing a Training Module on Inclusion for Childcare Providers to be shared with Early Childhood Providers
• Bring Early Intervention into the neighborhood childcare
Dr Wong Woan Yiing NECIC
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Inclusion Into Preschool & Early Years
Kuching Sarawak24th –26th November 2017
Perstauan Pengashu Kanak Kanak Berdaftar Sarawak & NECIC
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National Early Childhood Intervention Council
• 7th NECIC Conference 2018 Batu Pahat• Moving from Integration to Inclusion • 30th August‐‐‐1st Sept 2018
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• Mrs Lim wonders, “Would a mainstream school or a special education (Pendidikan Khas) school be more suitable for Eric? How do I decide which is the best school for him?
Dr Wong Woan Yiing NECIC
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Education Options in National School System
1. Special Education Schools—specific schools for hearing and visually impaired
2. Special Education Integrated Program (SEIP)/PPKI‐‐Specific classes in mainstream schools following Curiculum Pendidikan Khas
3. Inclusive Education Program—children with disabilities are integrated into mainstream classes
Dr Wong Woan Yiing NECIC
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Eligibility requirements for the special needs education system
• Under The Education (Special education) Regulation 2013
• Children who intend to enroll in special needs education will be required to attend a probation period of no more than 3 months at a government school to determine eligibility
• After completion of probation period, school will submit a Probation Period Report to a panel for consideration
• Panel : Head teacher/Assistant for Sp Ed State Education officer & Social welfare department officer
Dr Wong Woan Yiing NECIC
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• Child who does not meet eligibility criteria under Special Ed will be referred to CBR managed by Welfare
• Decision whether to place the child in Inclusive classes is influenced not by the child’s ability but by school’s capacity to cope with the child in mainstream eg trained teachers or teaching facilities (Charity ‐Medical model)
• 2012 ,1% of 50,738 children with disabilities enrolled in special needs education in that year
Dr Wong Woan Yiing NECIC
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Education Options in Private sector
• Early Childhood Care Education Providers (Preschools and Kindergartens)
• International schools• Private schools ‐‐NGOs• Home schools—NGOs/Faith based organizations
Dr Wong Woan Yiing NECIC
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Special Schools for Autism
• NASOM• ASAP (started with 8 parents)• IDEAS Autism Centre (30 children)• PERMATA Kurnia (Prime Minister Department)• Home School –faith based
Dr Wong Woan Yiing NECIC
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Education Blueprint
• Only a small fraction of students with special needs are currently in inclusive programmes (~6%).
• Most attend integrated programmes (~89%)
• the rest attend special education schools (~5%).
Dr Wong Woan Yiing NECIC
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Malaysian Education Blueprint (2013‐2025)
• 1st wave : HF special needs students encouraged to attend inclusive education program, moderate functioning attends Special Education Integration program
• 2nd Include special needs education training into the basic training of all teachers and exploration of partnerships with other government agencies and non‐government and international organisations to provide support for special needs education
• 3rd wave :Evaluate and consolidateDr Wong Woan Yiing NECIC
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Problems in Delivery of Education Services
• Targets by MOE Education Blueprint : 30 per cent of special education needs (SEN) students in the inclusive programme by 2015.‐‐‐‐unattainable
Quality of Special Education Teachers variesReluctance to institute a teacher Aid program to support children in mainstream education systemLimited availability of speech therapists and educational psychologists in schools
Dr Wong Woan Yiing NECIC
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Problems in Delivery of Education Services
Recent LINUS KPI resulting in unloading children with ASD to special educationChildren are still stigmatized by 2013 Education Regulations as “suitability” .This is against the principles of Inclusiveness.Inequality in distribution of services with Rural areas and Urban Poor are sidelined in services
Dr Wong Woan Yiing NECIC
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Memorandum on inclusive Education
Supported by > 60 NGOsSubmitted to MOE 2012
Detailed and comprehensive recommendations of policies and strategies to include children with disabilities into mainstream classes
Dr Wong Woan Yiing NECIC
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What can be done?1. Rebranding our special education programme
into an inclusive education programme. 2. Introduce Inclusion KPI as a measure of
increasing inclusiveness 3. Immediately formalise a teacher aid (shadow
aid) programme. – While waiting for the Ministry of Education (MOE) to make available the staffing, parents and NGOs can, in some instance, provide the resources for a teacher aid.
Dr Wong Woan Yiing NECIC
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Ministry of Women Family & Community Development
• Help to disperse government financial support for children registered with disability (OKU)
• Large EIP Services provider, via Community base Rehabilitation Centre (CBR) meeting needs of rural communities (486)
• Urban services limited (left to NGOs)• CBR, a preferred alternative to institutional care and ensure acceptance and social integration of children with special needs
Dr Wong Woan Yiing NECIC
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Services of CBR
• Therapy (Physio/OT/Speech)• Language and social development• Basic Daily Life skills• Reading ,writing and Arithmetic• Recreational Therapy• Independent Living Training
Dr Wong Woan Yiing NECIC
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Problems in Delivery of Welfare services
• CBR services – Quality generally poor– Extremely limited specialized staff
– Families are not consulted or involved
– Funding only for registered children with OKU
– Becoming like childcare centers
– More adults than children
• Financial Aid– Limited to those registered as OKU and attending schools
Dr Wong Woan Yiing NECIC
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More can be provided by MWFCD
• Counseling services –‐‐– counseling the child and family, and providing parent training and education programs specific to the child’s developmental needs.
• Provide Respite Care• Monitoring on EI Centers• Flexible financial assistance• Support for long term planning (employment)
Dr Wong Woan Yiing NECIC
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Services by NGOs & Professionals• Mushrooming• Multidisciplinary under one roof, cater for the needs of families, Good Quality
• Family focus ,,Financially motivated• Prohibitive Charges
Dr Wong Woan Yiing NECIC
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IDEAS (Institute for Democracy and Economic Affairs )Policy Ideas No.17 Setting up special needs centres:A focus on early intervention centres for the underprivileged (Tamanna Patel)
Dr Wong Woan Yiing NECIC
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Parents Know Best
• Family ‐‐‐Promote use of Peer Support• Social Media—Early Childhood Intervention Gp
Dr Wong Woan Yiing NECIC
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Dr Wong Woan Yiing NECIC
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Dr Wong Woan Yiing NECIC
John Forster The Trans-disciplinary Key Worker in Early Childhood Intervention:Why Do We Do It? How Do We Do It?
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Way Forward
1. Move away from the charity and Medical Model to Social Model with Family Centered Approach and families are involved .
2. Training of KEY workers to be Transdisciplinary3. Enforce a Fees Schedule for financially motivated
services4. Disseminate services to Vulnerable segments of the
population—urban poor and rural—Mobile clinics5. Move away from Single Disability Focus, Be
InclusiveDr Wong Woan Yiing NECIC
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Thank You & Save the Dates
Dr Wong Woan Yiing NECIC
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Acknowledgments
• NECIC Council members for their input• UNICEF—Children with Disabilities in Malaysia 2014• Living with Autism in Malaysia (IDEAS)• Meeting the Needs of Children with Disability in Malaysia (HSS Amar)
Dr Wong Woan Yiing NECIC