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1
(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
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
• 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 DISABLED PERSONS
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
• VISION : Equity in health care for PWD
• MISSION: Ensure a comprehensive
health care for PWD at all levels of care
• OBJECTIVE:
• To provide equal opportunities for
health care for PWD
• To empower individuals, families
and communities for self care and
development of support services
• To decrease prevalence of
disabilities through the provision of
adequate medical rehabilitation
services at all levels of care
1. Advocacy on issues and policies related to PWD
2. Increase accessibility to facilities and services
3. Empower individuals, families and communities
4. Strengthen intersectoralcollaboration
5. Ensure adequate and competent workforce
6. Intensify Research and Development
7. Program Development for Specific
Disabilities
*STRATEGIES : 7 strategies
• 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)
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
HEALTH PROGRAM POLICIES
DURING PREGNANCY
• Identify high risk cases
(colour coding)
• Referral of high risk
cases e.g. prolonged
labour, fetal distress
• Postnatal visit to mother
and child – early
identification of
problems
CHILD
• Physical examination
• Anthropometry
• Developmental
Assessment
– Gross motor
– Fine motor
– Hearing
– Psychological and
speech
EARLY DETECTION
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 PARENTS
• Parent Education to improve
knowledge and skill to help child
• Counseling – individual and group
counseling
THE FAMILY
• Family Education including siblings to
enable understanding and skill
development to assist child with special
needs
• Family support groups
THE COMMUNITY
• Interagency networking to improve results
– making environment more friendly .
• Providing assistance to Community Based
Rehabilitation Centers
• Support NGO activities
EARLY INTERVENTION
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
District Health OfficeNo. : 141*
Health Clinic•Coverage: 20,000 population
Mobile Services
* Dec 2006
90% population within 5 km of health facility
(NHMS II)
14
Two Tier System
Community Clinic• Coverage: 4,000 population
* Health Informatics Centre Data, MOH 2010
Home visiting : nursing &
rehabilitation – follow up
case at home for
severe/bedridden
child/adults with
disabilities
DOMICILIARY HEALTH CARE
DHC services in 160 health clinics
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
Year 2015 :
Total 542 (58%) health
clinics provide Medical
Rehabilitation including
outreach to CBR.
NEGERI PT 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
NUMBER OF PT & OT IN HEALTH CLINICS BY STATES
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
Diabetes30.4
(28.2, 32.7)
17.5
(16.6, 18.3)
Hypertension 53.9
(51.3, 56.4)
30.3
(29.3, 31.2)
Hypercholesterolemia56.6
(54.1, 59.0)
47.7
(46.5, 48.9)
Current smoker
17.0
(15.2, 18.8)
22.8
(21.9, 23.8)
Current drinker5.8
(4.5, 7.5)
8.4
(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
International 945
Local 711
Category of
material
Type of material
Abstract 732
Guideline 5
Full text 701
Report 12
Thesis/Dissertation 197
Presentation 7
Others 2Type of disability
Physical 479
Mental 330
Learning 307
Hearing 148
Speech 21
Visual 110
Multiple 213
Others 48
Age category
Children 458
Adult 141
Children/Adult 404
Elderly 73
Adult/Elderly 446
All ages 134
TOTAL
ABSTRACTS
COMPILED
= 1656
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
Promotional activities
Observe World Sight Day
Screening among children at 4
years – early identification of
squint years
Fundus camera in Health Clinics
to Improve eye care among
diabetics
Develop services for Low
Vision
Expand screening to pre
school and kindergarten
Survey on Visual
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
with Special Needs Promotional activities
Specific disabilities –
autism, hyperactive
Screening e.g. M-CHAT and
growth and development
Confirmation of children with
learning disability (LINUS)
Rehabilitation in Primary Care
Intensify training for
Children and Adolescent
with Disabilities, ie
Training materials - SRH
– health , special
education and welfare
RESOURCES FOR CHILDREN WITH DISABILITIES
•World CP day – 2 October
•World DS day – 31 Mac
•World Autism day – 2 April (Dataran DBKL
“Semarak Biru”)
Awareness Campaign
ACHIEVEMENTS
1. PROGRAM INDICATORS
Activity Target
Number and % of children 0-1 year
detected with disabilities
(0.12%)
Children in CBR receiving health
services
(90%)
% of cases default from rehabilitation
program
(<20%)
Number and % of children 18 month
detected with Autism (MCHAT)
(0.16%)
Number of health clinic with Domiciliary
Health Care team
(160 HC)
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 PendaftaranOrang 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 PelaksanaanPerkhidmatan 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
MODUL / MANUAL
INTERVENTION : CPG
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
INTRODUCTION
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
SCREENING TOOLS
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)
53
COMBINED MALAY & ENGLISH M-CHAT
54
DATAGrowth &
developmental ass.
at Health Clinic
(0-6yrs)
Screening using M-CHAT
(18 mths/3 yrs)
1
2
Scoring
FAILED
3
Data
Collection
* Data collected by Family Health
Development Division, MOH from Health
Clinic for further analysis*
Referred to
MO /
specialist
4
5
No
Yes
55
Children aged 18 months screened at health clinics
554 (0.15%)
No of child
screened at
health clinic
RESULTS
56
1,132 (0.30%)
No of child
screened at
health clinic
RESULTS-2
Children aged 18 months screened at health clinics
57
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
58
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
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
MULTI DISCIPLINARY TEAM
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 : ASSESSMENT & INTERVENTION
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
OCCUPATIONAL THERAPY MAY COMBINE A VARIETY OF STRATEGIES/APPROACHES.
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 & TRANSITION
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.
MONITORING
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
TRANSITIONING
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
IMPAIRMENT/KELAINAN/KECACATAN
ACTIVITY LIMITATION(DISABILITY)
LIMITASI KEBOLEHAN
PARTICIPATION RESTRICTION/
HALANGAN
Pencegahan dan Promosi
-Health Education
-Injury Prevention
-Immunisasi
Pengesanan dan intervensi awal
-Screening
-Referral
-Early stimulation
Limitasi ketidakupayaan dan rehabilitasi
- Assistive Device
- Reduce Barriers
- Adaptations etc.
PERANAN KESIHATAN :
THANK YOU
69
BAHAGIAN PEMBANGUNAN KESIHATAN KELUARGA
KEMENTERIAN KESIHATAN MALAYSIA
http://fh.moh.gov.my