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