(1st National Conference on Autism &

Inclusion – Supporting Families &

Engaging Professional) : 1st April 2017

Making the Rights of PWDs Reality:

Current status of services for children with
Autism and Opportunities on Health Policies

1
 CONTENT

 Intro to Health Care Program for PWDs

 Policy and Strategies

 Disability Inclusive Health Initiatives

 UPDATE : Autism Spectrum Disorder Screening &

Intervention Program In Malaysia

 Challenges / Conclusion
 HEALTH CARE FOR DISABLED PERSONS

• Before 80’s – Services at health clinic focused on disability

prevention. Rehabilitation in hospitals.

• 1986 – MOH began EIP Program for children with special

needs. Focus of service
– Early detection of disabilities
– Referral to hospital for rehabilitation
– Early stimulation activities at clinic/home

• 1996 – service expanded to rehabilitation at health clinics.

• 2000 – strengthen networking with other agencies / NGO

 HEALTH CARE FOR PERSONS WITH
DISABILITIES

 Health services
 Care of children with special needs (CWSN)
 Care of adults with disabilities
 Program prevention and control of Blindness
 Program Prevention and Management of Deafness
and Hearing Impairment
 Domiciliary Health Care
 SERVICE PROVISION BASED ON PUBLIC
HEALTH APPROACH
 Three Levels of Prevention

 Primary Prevention
 Health Promotion and Specific
Protection

 Secondary Prevention
 Early Diagnosis and Prompt
Treatment

 Tertiary Prevention
 Disability Limitation and
Rehabilitation
 POA : HEALTH CARE FOR PWD 2011-2020
1. Advocacy on issues and policies • VISION : Equity in health care for PWD
related to PWD
2. Increase accessibility to facilities • MISSION: Ensure a comprehensive
and services
health care for PWD at all levels of care
3. Empower individuals, families and
communities
• OBJECTIVE:
4. Strengthen intersectoral
collaboration • To provide equal opportunities for
health care for PWD
5. Ensure adequate and competent
workforce • To empower individuals, families
and communities for self care and
6. Intensify Research and development of support services
Development
• To decrease prevalence of
7. Program Development for Specific disabilities through the provision of
Disabilities adequate medical rehabilitation
*STRATEGIES : 7 strategies services at all levels of care
• In line with CRPD and PWD Act
INTERNATIONAL AND NATIONAL MANDATES
 National PWD Policy (2007)
 National Plan of Action for PWD (2016-2022)
 PWD Act (2008)
 Child Act (2001)
 Convention on the Rights of PWD (2008)
 Incheon Strategies (2012)
 Global disability POA (67th WHA 2014)
 HEALTH PROGRAM POLICIES
PREVENTION
• Immunisation Programme
– polio (1972) , measles (1984)
rubella (1988) dan Hib (2002)
• G6PD Screening (1991)
• Screening for Congenital
Hypothyroidism (1999)
• Accident Prevention (1999)
• National Iodine Deficiency Disorder
Prevention and Control Programme
(1995)
• Prevention and Control
Programmes for Blindness (1996)
and Deafnesss (2003)
• Violence and Injury Prevention
Programme (2007)
INTERVENTION
Health Care for Persons with
Disabilities
Program and Plan of Action (1996)
– Care of Children with Special Needs:
Plan of Action , 1998
– Community Mental Health and
Psychosocial Rehabilitation 1998
– Prevention and Control of Blindness
2000
– Prevention and Management of
Deafness and Hearing Impairment
2003
– Sexual and Reproductive Health for
Children and Adolescent with
Disabilities 2004
– Strengthening of Rehabilitation Services
at the Health Clinic 2004
 EARLY DETECTION

DURING PREGNANCY CHILD

• Identify high risk cases • Physical examination

(colour coding) • Anthropometry
• Referral of high risk • Developmental
cases e.g. prolonged Assessment
labour, fetal distress – Gross motor
• Postnatal visit to mother – Fine motor
and child – early – Hearing
identification of
– Psychological and
problems
speech
 EARLY INTERVENTION
THE CHILD
• Medical Intervention
• Therapy :- Physiotherapy, Occupational Therapy,
Speech
• Individual Care Plan : Care plans based on
capabilities of individual child with focus on
improving function and towards independence.
THE FAMILY
• Family Education including siblings to
enable understanding and skill
development to assist child with special
needs
• Family support groups
THE PARENTS
• Parent Education to improve
knowledge and skill to help child
• Counseling – individual and group
counseling
THE COMMUNITY
• Interagency networking to improve results
– making environment more friendly .
• Providing assistance to Community Based
Rehabilitation Centers
• Support NGO activities
1) ADVOCACY ON ISSUES & POLICIES RELATED
TO PWD
ACTIVITIES
 JK Teknikal Kesihatan OKU
(1996) and JK Quality Life
Care for PWD (2009)
 JK Quality Life Care for PWD
(involve DPO, PWDs)
 Disability Friendly Services
Training Manual developed
with NGOs for disability
awareness
 Training of core trainers from
states (include PWD
personnel) started in 2015
Developed with NGOs for disability
awareness training manual (DAT)
2) ACCESSIBILITY TO FACILITIES AND
SERVICES
ACTIVITIES

 Planning Briefs for facilities has included disability features

 Health information on MOH services have included
disability friendly features
 Special counter/fast lane for PWD initiated

 Exception from Fee Act (Registration in KK/Hospital, home

visiting & Ward 3rd)
 Rehabilitation services in 212 health clinics
 16 PsychoSocial Rehabilitation in primary care & 11MCHC
 Rehab Hospital Cheras & all state hospital
 DISTRICT HEALTH SERVICES

90% population within

District Health Office
5 km of health facility No. : 141*
(NHMS II)

Community Clinic
• Coverage: 4,000 population

Mobile Services

Health Clinic
•Coverage: 20,000 population

Two Tier System

* Health Informatics Centre Data, MOH 2010
14
* Dec 2006
DOMICILIARY HEALTH CARE

DHC services in 160 health clinics

Home visiting : nursing &

rehabilitation – follow up
case at home for
severe/bedridden
child/adults with
disabilities
DATA TAHUN 2016 (KES MENERIMA PPD)

WARGA
EMAS 2139
69.9%
3. EMPOWER INDIVIDUALS, FAMILIES AND
COMMUNITIES
ACTIVITIES

 Development of health education material on disability prevention and

on specific disabilities

 Training of caregivers on handling of PWD at home - Domiciliary Health

Care Services

 Training on early detection of disabilities, intervention at home

 Provide technical assistance to family and community support groups

(CBR)
OUTREACH SERVICES (NBOS7: 1MALAYSIA FAMILY
CARE)
 PDK Ku Sihat
 Empower PWDs for
healthy life style focus
healthy food and regular
physical activity
 KPI MOH
• Cover all (508) CBR
centers
• >90% students
registered at CBR
center must have
health screening
TRAINING MODULE FOR CAREGIVERS
 Training Manual
for Caregivers in
Institution and at
home
5. ENSURE ADEQUATE AND COMPETENT
WORKFORCE
ACTIVITIES

 Increasing placement of therapist in health clinics

 New post in primary care – speech (2), medical social worker (21) and
dietician (65).
 Guidelines, manuals , in-house training, post basic training for
paramedics on rehabilitation
 Training for caregiver in institutions
 Increase Multidisciplinary team management in primary care
NUMBER OF PT & OT IN HEALTH CLINICS BY STATES
NEGERI PT OT
Perlis 5 3
Year 2015 : Kedah 20 13
Total 542 (58%) health
Pulau Pinang 14 9
clinics provide Medical
Perak 24 21
Rehabilitation including
outreach to CBR. WPKL &
26 14
Putrajaya
Selangor 36 23
Negeri Sembilan 19 16
Melaka 15 7
Johor 31 19
Pahang 27 14
Terengganu 24 15
Kelantan 28 16
WP Labuan 1 0
Sabah 22 20
Sarawak 40 24
BPKK, KKM 2 1
Kader JKM 25 14
Malaysia 359 229
 REHABILITATION PROGRAM

 Rehab in PHC – initially

conducted by nurses and
supervised by therapist

 Currently Physiotherapist
(359) and occupational
therapist (229) placed in
Health Clinic

 Working towards
Multidisciplinary team
management

 Outreach to CBR centers,

school /classes for CWSN and
institution care
USE OF M-CHAT TO DETECT CHILDREN
WITH AUTISM
 Incorporate into new child
health record 0-6 years
(nationwide in year 2012)

 Training
 Nurses to assist in
screening, planning and
referral
 Train FMS on DSMV
 Management - MDT

Awareness on autism
• Public
• Preschool teachers
• Training of Health Staff
in management of
CWSN
– Prevention of Disabilities
– Common problems in
children
– Rehabilitation l Care
– Nutrition
– Dental
– Counseling
A training module has
been developed
and covers both
teaching of

- life skills
- sexual health

Objective: Personal
Safety and Abuse
Prevention
CONCEPT OF PLAY IN MANAGEMENT OF CHILDREN
WITH SPECIAL NEEDS

• Importance of Play as a Stimulation

In The Development of Children

• Types of Play for Children With

Special Needs – sand, water, clay,
story telling, puppetry etc
Care giver training – improve quality
of care

Hygiene
Physical care
Stress management
Communication
Recreation

Sexual and reproductive health

issues
6) INTENSIFY RESEARCH AND DEVELOPMENT

ACTIVITIES

 Survey for prevalence rates on specific impairments/disabilities–

blindness (1996), deafness (2005) and physical disability (2006)

 Development of web based clearinghouse for research on disability

2010

 Jointly developed care indicators for PWD institutions under DSW

(2012).

 National Health and Morbidity Survey 2015 (Disabilities) and 2016

(Maternal and Child health ; Autism prevalence)

 Develop/adapt WHO in depth Model Disability Survey Questionnaire

 NATIONAL SURVEY

 NHMS II (1996) – general disabilities

 NHMS III (2006) – physical disabilities and psychiatric
morbidity
 National Eye Survey (1996)
 National Ear and Hearing Survey (2005)
 RAAB Eye survey (2014)
 NHMS 2015 – Disability ((Washington Group on
Disability Statistics : Short Questionnaires on
Disability)
 NHMS 2016 – Maternal & Child health (prevalence
Autism 1.6% )
 Health status of disabled population in
Malaysia (NHMS 2015) & Report from
www.iku.gov.my
: the prevalence of disability 18 y/old and
above in NHMS 2015 was 11.8% (95% CI:
11.15 – 12.53) with an estimated 2,386,716
population affected

Prevalence (%)
Disabled population General population
30.4 17.5
Diabetes (16.6, 18.3)
(28.2, 32.7)
53.9 30.3
Hypertension (29.3, 31.2)
(51.3, 56.4)
56.6 47.7
Hypercholesterolemia
(54.1, 59.0) (46.5, 48.9)
17.0 22.8
Current smoker (15.2, 18.8) (21.9, 23.8)
5.8 8.4
Current drinker
(4.5, 7.5) (7.4, 9.5)
 RESEARCH AND DEVELOPMENT
 NHMS (National Health and Morbidity Survey) tahun 2016 adalah fokus
kepada kesihatan ibu dan anak. Soalan kesihatan anak adalah mengkaji
prevalen Autisme (akhir kajian prevalen Autisme, KKM adalah tahun 2005).
Pengumpulan data NHMS 2016, laporan dalam www.iku.gov.my
 Promosi laman sesawang clearinghouse for research on disability
http://chdisability.moh.gov.my
 PENCAPAIAN SEHINGGA 15 MAC 2017

Type of material
Category of Abstract 732
material Guideline 5
International 945 Full text 701
Local 711 Report 12
Thesis/Dissertation 197
Presentation 7 TOTAL
Type of disability
Others 2 ABSTRACTS
COMPILED
Physical 479
= 1656
Mental 330
Age category
Learning 307
Children 458
Hearing 148
Adult 141
Speech 21
Children/Adult 404
Visual 110
Elderly 73
Multiple 213
Adult/Elderly 446
Others 48
All ages 134
PROMOSI CLEARINGHOUSE ACTIVITIES: 2ND CBR
WORLD CONGRESS KL 27 - 29 SEPT 2016
7. PROGRAM DEVELOPMENT FOR SPECIFIC
DISABILITIES
ACTIVITIES

1. Programme Prevention
and Control of Blindness  Develop services for Low
Vision
 Promotional activities
 Observe World Sight Day
 Expand screening to pre
 Screening among children at 4
years – early identification of school and kindergarten
squint years
 Fundus camera in Health Clinics
 Survey on Visual
to Improve eye care among
diabetics Disability ; RAAB Eye
survey (2014)
Resources for Prevention of
Blindness (World Sight day 10 Oct.
7. PROGRAM DEVELOPMENT FOR SPECIFIC
DISABILITIES
ACTIVITIES
2. Programme
Prevention and Control of
Deafness
 Promotional activities
 prevention of deafness
 Better Hearing Month in
May
 Hearing Screening for High Risk
Babies in all hospitals
• Expand Universal new
born screening to all
major hospitals ( currently 7
hospitals implemented)
 Improve rehab services in
hospitals
 Hearing aids , cochlea
implant subsidies
 Better Hearing Month in
2-4 May in Malacca
Resources for Prevention of
Deafness (Better Hearing &
Speech Month – May)
7. PROGRAM DEVELOPMENT FOR SPECIFIC
DISABILITIES
ACTIVITIES

3. Programme Children  Intensify training for

with Special Needs Children and Adolescent
 Promotional activities with Disabilities, ie
 Specific disabilities – Training materials - SRH
autism, hyperactive – health , special
 Screening e.g. M-CHAT and
education and welfare
growth and development
 Confirmation of children with
learning disability (LINUS)
 Rehabilitation in Primary Care
RESOURCES FOR CHILDREN WITH DISABILITIES Awareness
Campaign

•World CP day – 2 October

•World DS day – 31 Mac
•World Autism day – 2 April (Dataran DBKL
“Semarak Biru”)
ACHIEVEMENTS
1. PROGRAM INDICATORS

Activity Target
Number and % of children 0-1 year (0.12%)
detected with disabilities

Children in CBR receiving health (90%)

services
% of cases default from rehabilitation (<20%)
program
Number and % of children 18 month (0.16%)
detected with Autism (MCHAT)

Number of health clinic with Domiciliary (160 HC)

Health Care team
2. DEVELOPMENT OF HEALTH EDUCATION MATERIAL
 NGO involvement– depth of knowledge in specific
disabilities
•Spastic center
•Dyslexia Society
•Autistic Society
•Malaysian Care
•Associations of the Deaf and for the
Deaf
•Malaysian Association
for the Blind
•Malaysian Mental
Health Association
•Etc.
 2. GUIDELINES
 Development of “Borang Permohonan Pendaftaran
Orang Kuarang Upaya” i.e. format for registration of
child with special needs and suggested placement in
school/CBR etc. – BUKU ORANGE
 Rehabilitation in PHC ( Garis Panduan Pelaksanaan
Perkhidmatan Perubatan Rehabilitasi di Kesihatan
Primer, 2014)
 SOP for Rehabilitation in institutions
(Taman Sinar Harapan)
4. TRAINING

 Training of 6 manual ‘gross motor,

fine motor, ADL, visual impairment,
communication, personal & social

 Training in early detection and

intervention

 Training in SRH – personal safety

 Training of manual and training of

Caregivers in Institution and at
home
UPDATE AUTISME ACTIVITIES
SCREENING M-CHAT
INTERVENTION : CPG
MODUL / MANUAL
 INTRODUCTION

 Early detection & intervention in promoting better

long-term outcomes for children with ASD

 Recommended that paediatric primary care

providers incorporate standardised developmental
screenings within the developmental surveillance
during well-child care visits
American Academy of Pediatrics

Am Acad of Neurology & Child Neurology Society

 SCREENING TOOLS
 Limited studies on the effectiveness of
screening tools

 SRs1,2,3: better performing tools for ASD of young

children are:
 Checklist for Autism in Toddler (CHAT)
 Modified Checklist for Autism in Toddlers (M-CHAT)
 Social Communication Questionnaire (SCQ)

1. Sunita, Bilszta JLC. J Paediatr Child Health. 2013, 49(6):438-444

2. Norris M, & Lecavalier L. Autism. 2010, 14(4):263-284
3. Mawlea E, & Griffiths P. Int J Nurs Stud. 2006m 43(5):623-636
 Data on 2004 : 20% of cases confirmed having Autism
Spectrum Disorder (ASD) were detected before age of 4
years.
 Early detection, confirmation and early intervention for
ASD are crucial points to optimize outcome of
intervention.
 MOH 2005, a study conducted among toddlers (18
months to 3 years : a ASD prevalence rate of 1.6 per
1,000 children.
 M-CHAT (Modified Checklist for Autism in Toddlers) :
incorporated into the Child Health Record Book for
Children 0-6 years incrementally since 2008 and
implemented nationwide in 2012.
 STUDY 2005
 To assess the impact of the screening program using M-
CHAT on early detection of ASD
 To inform key stakeholders on the efficiency and
effectiveness of the screening program
 To make recommendations for further development of
the program
 MODIFIED CHECKLIST FOR AUTISM
IN TODDLERS (M-CHAT)
 ASD screening is done at age of 18 months and 3
years using M-CHAT as screening tool.
 A 23-item questionnaire on child behaviour and
development reported by parents
 Malay version for local use in Malaysian healthcare
facilities
M-CHAT

Not all children who fail the checklist will meet criteria for a diagnosis on
the Autisme Spectrum Disorder (ASD)
 COMBINED MALAY & ENGLISH M-CHAT

53
 1
Growth &
developmental ass. DATA
at Health Clinic
(0-6yrs)

2
Screening using M-CHAT
(18 mths/3 yrs)

3
No Scoring
FAILED
Yes
4 Referred to * Data collected by Family Health
MO / Development Division, MOH from Health
specialist Clinic for further analysis*

5 Data
54 Collection
 RESULTS

Children aged 18 months screened at health clinics

No of child
screened at
health clinic
554 (0.15%)

55
 RESULTS-2

Children aged 18 months screened at health clinics

No of child
screened at
health clinic
1,132 (0.30%)

56
 Before the screening programme
started, in 2004 only 20% (37 cases)
of the 187 cases confirmed as ASD
before age 4 years were detected.
This percentage has rapidly
increased from 40% in 2012 to 64%
in 2015.
Increase in detection :
 Public awareness
 Increase knowledge among
parents
 Increase knowledge among
health staff
 A screening tool
57
  The screening programme
using M-CHAT has
managed to increase
early detection and hence
early intervention is
possible.
 2015 , Clinical Practice
Guideline for
Management of Autism
Spectrum Disorder in
Children and Adolescent
developed.

Intervention by MDT
58
MULTI DISCIPLINARY TEAM
NEGERI BIL. PT BIL. OT
Perlis 5 3
Kedah 20 13
Pulau Pinang 14 9
Perak 24 21
WPKL & Putrajaya 26 14
Selangor 36 23
Negeri Sembilan 19 16
Melaka 15 7
Johor 31 19
Pahang 27 14
Terengganu 24 15
Kelantan 28 16
WP Labuan 1 0
Sabah 22 20
Sarawak 40 24
BPKK, KKM 2 1
Kader JKM 25 14
Malaysia 359 229
OCCUPATIONAL THERAPY : ASSESSMENT
& INTERVENTION
 Assess the client capability & problems
 Set goals / aims with client – short & long term goals
 Plan a treatment program
 Intervention based on clients problems
 Re-evaluation
 Discharge / Continue other programs -transition
 OCCUPATIONAL THERAPY MAY COMBINE
A VARIETY OF STRATEGIES/APPROACHES.

The interventions provided include:

 social skills
 self-help skills
 sensory integration therapy
 perceptual motor skills
 sensory-motor skills
 behavioural intervention
 developmental interventions

Case-Smith J, Arbesman M. Am J Occup Ther. 2008, 62(4):416-429

61
 MONITORING & TRANSITION

 Monitoring & transition for adolescents to adulthood

is crucial to enable them to achieve independent
living & full potential in all aspects of life.
 Care for children & adolescents with ASD should be
continued into adult health services.
 Children with ASD who are registered as OKU can
benefit from the social welfare service.
 MONITORING
 Monitoring needed
 Medication for co-morbidities (e.g. ADHD, sleep
problems, OCD, depression, epilepsy, GI issues)

 Physical, sexual & emotional growth

 Autistic children will have the same sexual

growth as normal children & these issues need
to be managed during adolescence.
 TRANSITIONING

 Should be discussed & planned by all

involved according to individual abilities:1
 Adult services – not established
 Daycare centres – not readily available
 Skill training & supervised employment – to be
encouraged

 These services are options for the adolescents

with ASD.2
1. Taylor JL. et al. J Autism Dev Disord. 2011, 4(5): 566-574
2. Taylor JL. et al. Pediatrics. 2011, 4(5): 531-538
 CHALLENGES
 Rise in Prevalence of disability
 Number of PWD increasing – aging population, survival of PWD,
complication of NCD
 Severity of Disability and Multiple Disabilities

 Services
 Expanding services requires funding
 Inadequate manpower – in terms of numbers and expertise
 Quality of service needs improvement – training
 Reproductive Health Issues

 Fostering Community participation

 Awareness and understanding of the needs PWD
 Care of caregivers (mental health)
 WAY FORWARD / CONCLUSIONS
 Empower individual, families and communities through provision of
adequate knowledge and skills

 Strengthen the provision of promotive, preventive and rehabilitative

services , ensuring accessibility to all

 Establish outreach programmes / activities using setting approach

 Resource allocation and manpower development

 Foster Intersectoral collaboration with stakeholders through networking

and smart partnerships

 Strengthen monitoring and evaluating mechanism and conduct research

PELAN TINDAKAN
ORANG KURANG
UPAYA (OKU)
2016 -2022
 PERANAN KESIHATAN :
ACTIVITY PARTICIPATION
IMPAIRMENT/ LIMITATION(DISABILITY) RESTRICTION/
KELAINAN/KECACATAN LIMITASI KEBOLEHAN HALANGAN

Pencegahan dan Pengesanan dan Limitasi

Promosi intervensi awal ketidakupayaan dan
rehabilitasi
-Health Education -Screening
- Assistive Device
-Injury Prevention -Referral
- Reduce Barriers
-Immunisasi -Early stimulation
- Adaptations etc.
 THANK YOU
BAHAGIAN PEMBANGUNAN KESIHATAN KELUARGA
KEMENTERIAN KESIHATAN MALAYSIA
http://fh.moh.gov.my

69