1

The National Autism Society of Malaysia (NASOM)

August 2018
1. Executive Summary

2. Autism & Lifetime Challenges

3. Situation in Malaysia & Service Gaps

4. Proposed National-Level Solution

5. Care Farm/Intentional Communities

6. Sustainable SPED School in a Farm Project

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 To set up & run a pioneering, international-class, sustainable special education, training,
employment & living facility for youths & adults with autism, in a farm environment
 Such facility would be the first of its nature in Malaysia & ASEAN. However, social farms for
therapeutic care & employment/vocational/living purposes have been around 60 years in
the UK, Europe & US
 Starting with a pioneer venture in Selangor, an adapted, tested & proven model to be
replicated in Perak, Penang, Kedah & Sarawak in subsequent phases
 As Malaysia’s most populous state with population of over 6 million, there may potentially
be as many as 40,000 (WHO estimate) to 60,000 (CDC estimate) in Selangor
 Large proportion of PWAs in Malaysia may be living under the radar due to such factors as
lack of awareness, social stigma, undiagnosed & unregistered cases. Only 20,000 PWAs are
registered with JKM vs 200,000-300,000 probable number based on WHO & CDC estimates
 Special education/care/social farms or intentional farm communities have been around
since 1960s and have become a favoured mainstream solution for higher-need youths &
adults with autism in many countries

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1. Executive Summary

2. Autism & Lifetime Challenges

3. Situation in Malaysia & Service Gaps

4. Proposed National-Level Solution

5. Care Farm/Intentional Communities

6. Sustainable SPED School in a Farm Project

4
 Lifelong, complex neurobiological disorders (not disease) affecting brain functions
(wiring of the brain), one of the world’s fastest growing developmental disorders
 Can be diagnosed within 2-3 years of birth. Cause is still being debated (genetics &
environment are main suspects), there is no known cure
 Very wide spectrum, hence Autism Spectrum Disorder (ASD), each case is unique, no
two cases are alike, from geniuses/savants to severe, aggressive, self-injurious
 Multiple combinations & levels of severity affecting speech/communication, social
interaction/behavior, cognitive function, rigid imagination/repetitive actions &
sensory processing/integration, plus co-occurring conditions
 A significant social issue that may affect as high as 20% population including parents,
siblings, paternal & maternal families, extended families, etc.
 Additional social challenges due to lack of visibility, parent/family denial, exclusion,
social stigma, myths & misconceptions, esp. in non-urban areas

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 Child prodigy Jake Barnett,
master’s student in
quantum physics at 14,
started PhD in theoretical
physics at 15. Taught
himself entire high school
maths in 2 weeks to enter
college at 10

Musical savant Rex Lewis-Clack,

born with blindness, ranks as
one of fewer than 50 people in
history to combine intellectual
disability, blindness & musical
genius. Taught himself piano at
age 2 until age 5, performing
internationally at 7

Quite a number of extraordinary minds, scientists, mathematicians, inventors, artists, musicians, etc. in history
& around the world are people on the autism spectrum. There could be some of them around us
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 Prevalence Rate Total Population Affected

• 1 in 59 children (2018 latest, US CDC) • 1% population (US CDC & adopted by Canada, UK,
• Previously 1 in 68 Australia, Singapore & many other countries)

• 8,500 – 9,500 children born annually • 1 in 160 global population (WHO, 2013)

• Malaysia crude birth rate (2016): 508,000
• Estimate 2017 18/1,000: 676,000
• Probable 200,000 – 300,000 PWAs
• Lives affected, including siblings, parents, paternal &
maternal families: As high as 20% population or around
6 million people

Registered as PWD with JKM

20,000 people

Where are the rest?

CDC – Centers for Disease Control & Prevention, a federal agency
under the Department of Health & Human Services, USA 9
 Probable population: 200,000 - 300,000 persons
Registered with JKM: < 20,000 persons

Savants
Parents Fear
Zone

Undiagnosed? Hidden & Forgotten Zone

Typical person’s developmental cycle What happens when parents are gone?
Many hidden & forgotten PWAs 10
 Unemployment rate among PWAs: 85-90%
• Those with jobs are frequently underemployed/earning less than market

 One-third of young adults move on to college after high school

• 70% or more may not enter the workforce/job market & get a job

 Less than 20% graduate from college

 Nearly 90% young adults continue to live with parents after high school
 20-40% young people formally & informally excluded from school
 Less than 10% of adults with autism may achieve real independence
 Two-thirds of adults with autism not getting the support they need
 Raising a child with autism in Malaysia can cost around RM100k a year
 Lifetime cost of autism support can run into millions of Ringgits
 Over 60% of families of PWAs incur debt to meet family needs compared to less than 50%
of typical families

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1. Executive Summary

2. Autism & Lifetime Challenges

3. Situation in Malaysia & Service Gaps

4. Proposed National-Level Solution

5. Care Farm/Intentional Communities

6. Sustainable SPED School in a Farm Project

12
 NASOM – early intervention centres, therapy centre,
• MOH screening (M-CHAT), vocational centres, group home, parents support,
diagnosis (DSM-5/ICD-10) & some advocacy, national campaigns, lifespan services &
therapy services National support, no exit requirement
• Department of Social Welfare Society
(JKM) CBR (PDK) centres &
supported living centres Local/ Various services but limited to a
• MOE inclusive & integrated Public/Govt Standalone particular state or city, with exits.
classes, community vocational Services Societies/ Available in almost all states & big
colleges Associations
cities
• Permata Kurnia, early Persons
intervention COE previously With
under PM’s Dept Autism &
Family
Parent Independent of service providers,
Almost all types of services, at Private Support advocacy, campaigns, social media
market prices, from diagnosis, Services Groups &
Social Ents self-help groups, social enterprises
various types of therapy to
international schools & tailored
vocational programs, with exits Foundations
& Religious
Institutions
State welfare programs & for free
or almost fee services

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Youth & adult programs Supersharkz ABC Hope Bridge
Care2Run CADS TLC Arisma PDK/CBRs
Music Mart PJ
Music, Art Schools Gold
Sports Vocational, Arts
Kolej Komuniti & Crafts
Creative & SAMH/Harapan
ILKBS/IKBN
Performing Arts Bengkel Daya
Selangor Dredging
Cheshire Home Assisted/ Perkopb
Tender Hearts Hospitality, Sheltered
Independent Living Vocational
ACP Culinary, Café,
Assisted Employment
Bakery Taman Sinar Harapan
Rimau Cafe Skill Development
Daya Cafe Transition to Adulthood
Alternative Vocational
Independent, ILTC
Blue Collar Mainstream, Special & Supportive,
Mydin Supported Living
Employment Vocational
Giant Early Intervention

Special Farm
Microsoft
STEM/TVET Community
TVET

Gamuda Academy White Collar Residential Care

Employment & Respite Care
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But not
for PWAs
yet
 • How many gainfully employed
• What is unemployment rate Independent/
• How many children with • How many receive special youth supported living
autism enter schools training & employed & adult/old age
Early detection • How many excluded • What is being done to increase care
& intervention/ • How many stopped halfway rate of employment
transition to • What is being done to • How many total population
school Inclusive • How many registered for
increase rate of inclusion
employment &
welfare benefits
enable an
• How many children diagnosed • What is being done to
Inclusive inclusive society
• How long is waiting time for reduce their long term
education & dependency on welfare
diagnosis transition from
• What is the prevalence rate • What is being done about
school to work
• What is being done to increase their old age care
early detection & intervention

Supporting
parents/guardians,
caregivers & NGOs
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 Gaps: Higher needs adult programs,
Vocational programs, e.g. farm & animal-assisted therapy,
School age intensive social enterprise, respite care & old
intervention programs (IIP), supported employment
& sheltered workshop age adult residential care
early intervention programs
(EIP) & mainstream school
support Gaps: Residential vocational
program & group home
Gaps: Employment/vocational
Pre-school intensive Pre-vocational opportunities & support
intervention programs transition program
(IIP), early intervention
programs (EIP) & parents Gaps: Higher quality special education
training in conducive, autism-friendly learning
environment & well-equipped facilities

Early screening
& diagnosis

Other therapy programs – music,

Gaps: On-going educational, occupational,
creative/performing arts, arts &
& therapeutic/intervention support
crafts, sports
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 A 31-year old parent-based society, the first & only national-level voluntary society fully
dedicated to autism cause in Malaysia
 First & largest NGO/charitable autism service provider with 20 early intervention,
vocational & therapy centres nationwide, serving over 500 PWAs & over 1,000 parents.
Have served over 5,000 PWAs over the years
 The only provider of lifespan services & support, from young children around 3 years old to
adults approaching 40 years old
 As the national society, NASOM champions the national autism agenda & rights of all
persons with autism in Malaysia
 A member of ASEAN Autism Network (AAN) & World Autism Organisation (WAO)

 Registered on 3rd March 1987 with the Registrar of Societies

 A tax exempt charity under Sec 44(6) of the Income Tax Act

 Will be hosting the World Autism Congress in 2022

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Alor Setar Kota Bharu
Kota Kinabalu,
Penang Kerteh in the making
Butterworth
Ipoh
Miri
KL (5)

Setia Alam
Kuantan
Klang (2)
Seremban EIP, IIP 13 centres
Vocational & 3 – Bandar Puteri, Jalan Ipoh &
Melaka
Segamat Muar Skill Devp. Taman Supreme
EIP + Vocational 4 – Melaka, Penang, Butterworth &
Kuantan
OSC, CAC, IIP Setia Alam Therapy Centre

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 Gombak

Jalan Ipoh
(Vocational)

Titiwangsa
Setia Alam
(Therapy)
Taman OUG

Teluk Pulai
Taman Supreme
(Vocational)

Bandar Puteri
(Vocational)

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 Non-Profit For-Profit

Societies/ Social Business with/

Pure Charity Foundations Strictly Business
Associations Enterprises for a Cause

Economic Empowerment
100% Donation/Welfare 100% Earned Income/Profit
Program (EEP)

Convert to NGOs & social enterprises

PDKs/CBRs
The Good Shop
Religious institutions-backed Art Market Malaysia ABC
services NASOM Tender Hearts TLC
Hippotherapy
Government agency/ Gold
department Kids Gym
SAMH/Harapan ACP
Kolej Komuniti Blokke/LEGO
Cheshire Home Simply Cookies
ILKBS/IKBN Hope Bridge
Yayasan Tuanku Bainun Seven Tea One
PDKs/CBRs Oasis
ILTC/Beautiful Gate Coffee for Good
Taman Sinar Harapan Care2Run Mydin
Rotary 21
1. Executive Summary

2. Autism & Lifetime Challenges

3. Situation in Malaysia & Service Gaps

4. Proposed National-Level Solution

5. Care Farm/Intentional Communities

6. Sustainable SPED School in a Farm Project

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 Proposal to formulate a national autism initiative & establish a national-level, coordinated
multi-agency approach to autism management is pending since April 2018
 Proposal is consistent with global calls for action the make the right real for PWAs

 Developed & adapted based on outcomes of Thimphu Declaration 2017 & Beijing Declaration
2017, as well as study of national autism strategies of other countries
 Raised for discussion at MOH Quality Life Care Committee on 15 November 2017

 Presented & recommended to Working Group set up by MOH Quality Life Care Committee
with representatives from MOH, MOE and JKM on 10 January 2018
 Supported by the Working Group & a member of MKBOKU (National PWD Council) for
escalation to MKBOKU
 Presented to Technical Meeting/Committee, MKBOKU on 3 April 2018 & recommended to be
presented to next MKBOKU meeting
 At the current pace, it will take quite some time to get anything done

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• All children have the right to education (Article 28)
• Children who have any kind of disability have the right to special
care & support (Article 23)
- United Nations Convention on the Rights of the Child, 1989

• 2nd of April every year declared as World Autism

Awareness Day (WAAD)
- United Nations General Assembly Resolution, 2007

• “Make the Right Real” new Asian & Pacific Decade of

Persons with Disabilities 2013-2022
- Incheon Strategy, 2013

• Comprehensive & coordinated efforts for the

management of autism spectrum disorders
- World Health Assembly Resolution WHA67.8
World Health Organisation, 2014

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 Conventions on the Rights of the Child (CRC), 1989
Convention on the Rights of Persons with Disabilities (CRPD), 2006
UN Decade of Disabled Persons 1983-1992

South (East) Asia Asia & Pacific

• Dhaka Declaration 2011 on Autism Spectrum
Disorders & Developmental Disabilities
• Jogyakarta resolution 2012 on comprehensive &
coordinated efforts for the management ASD &
neurodevelopmental disorders for South-East Asia
• Launch of Global Initiative on Autism, Dhaka, 2014
• Thimphu Declaration 2017, accelerating efforts,
whole-of-society & whole-of government approach,
strengthen national capacities in health, education &
social care sectors to support people with ASD & NDD
• Asian & Pacific Decade of Disabled Persons 1993-2002
• Extension of the Asian & Pacific Decade of Disabled
Persons to 2003-2012 & proclamation of Biwako
Millennium Framework
• Incheon Strategy for the new Asian & Pacific “Make the
Right Real” Decade of Persons with Disabilities 2013-2022
• Beijing Declaration 2017, accelerating implementation of
the Incheon Strategy, convergent multi-ministerial
approach, partnership with civil society, and enhancing
collection & use of reliable data

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 Incheon Strategy 2013
• Pelan Tindakan OKU 2016-2022, skewed towards
• 10 goals to “Make the Right Real” for PWDs in Asia
& Pacific, leave no one behind
• Road Map for implementation of Incheon Strategy
2013-2017
Beijing Declaration 2017
• Midpoint review of Asian & Pacific Decade of PWDs
2013-2022
• Action plan to accelerate implementation of
Incheon Strategy
• Recalling UN General Assembly resolution 67/82,
2013 on autism spectrum disorders,
developmental disorders and the like
• Commit to convergent multi-ministerial
approaches & partnership with civil society
organisations, private sector & academia for
disability-inclusive development
• Commit to enhancing the collection & use of
reliable & comparable updated data to support
evidence-based policy making
addressing physical environment, facilities, services,
etc. for persons with physical disabilities
• The ASEAN Autism Network (AAN) represented the
ASEAN autism community at the meeting
• Goal 5 amended to add early detection,
intervention & education for children with
disabilities quoting the right to inclusive education
& right to receive coordinated services
• Mainstream education should be disability-inclusive
at pre-primary, primary & secondary levels
• Governments should map the status of disability
statistics across ministries and develop &
implement national plans to improve reliability &
usability of disability data
• Call for multi-agency, whole-of-government, whole-
of-society approach
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 OKU Council Pelan Tindakan OKU/
Incheon Strategy &
Beijing Declaration
National Advisory Council Inter-Agency Autism Initiative/
for Autism National Autism Initiative & Mgmt

Special Panels/Committees, e.g. MOH MOE JKM Etc.

- National Autism Database
- Early Detection/Diagnosis KBS KSM DOA KPKT Secretariat/Program
- Compulsory/Inclusive Education Management Office
- Youth Training & Development (PMO)
- Inclusive Employment National Autism Strategy
- Independent Living & Housing
- Etc.

UN & Inter-Governmental
Agencies e.g. WHO, ESCAP,
APCD, SEAMEO, UNICEF

Corporates, GLCs & the

MOH MOE JKM KBS KSM DOA KPKT Etc.
Public

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 1. National Autism 2. Early Detection & 3. Inclusive & Special 4. Youth Development &
Registry/Database Intervention Education Adult Employment
• Take stock of existing • Autism awareness • Make primary education • Technical & vocational
available data campaigns/outreach compulsory education & training/
• Consolidate central • Train frontline medical • Assist parents, guardians, rehab for special youths
MOH, MOE, JKM, database/registry staff to recognise signs caregivers & NGOs to • Alternative career
establish National • Distribute collection of • Improve infra & resources prepare special children options matching special
Autism Initiative & new data to hospitals, for early diagnosis & for school talents & abilities
Management under schools & universities intervention • Improve infra, facilities & • Encourage & incentivise
OKU Council • Analyse data for trends • Involve & train parents in resources to cater for employers to hire PWAs
& patterns handling special children needs of special students • Job search assistance,
• Syndicate with other • Assist NGOs that provide • Train teachers to handle job & mobility support
agencies to develop early/pre-school & teach special students • Employers to provide
plans to prepare intervention, school • Provide special needs special needs support
children for next stages support & parents training support, e.g. therapy • Assist NGOs that provide
• Roll out new ICD-11 global • Support NGOs providing skill development & job
Lead: KKM, JKM diagnostic manual in 2018 SPED services support services

Prevalence Study Lead: KKM Lead: KPM Lead: KBS, KSM, MOA
NASOM organise awarded to Permata
National Advisory Kurnia last year. Award
Council for Autism withdrawn June 2018
& set up Special Special Panel for Early Special Panel for Inclusive & Special Panel for Youth &
Panels tapping Detection & Intervention Special Education Young Adults
expert resources
5. To add workstream No.5 – Independent & Supportive Living Centres in due course 28
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1. Executive Summary

2. Autism & Lifetime Challenges

3. Situation in Malaysia & Service Gaps

4. Proposed National-Level Solution

5. Care Farm/Intentional Communities

6. Sustainable SPED School in a Farm Project

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Ruskin Mills Trust, 8 locations/ Camphill Communities, 26 locations Camphill North America, 12
colleges in UK inc 4 colleges in UK. In over 22 locations in USA & Canada
counties around the world

Innisfree Village Bittersweet Farms Sweetwater Spectrum 34

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Around 490 kids age 6-18, has own paddy field, fruit orchard, cows, buffalos, fish farm,
mushroom farm, barber class, housekeeping class, soap making, residential facilities
 • A project of the Association of Adults with Autism Philippines (AAAP),
initiated 2011, announced 2012
• Target completion 2018, will be the first integrated living facility in
the Philippines for adult PWAs
• Modeled after integrated community living farmsteads in the US
• Educational, vocational, work, farm work & recreational facilities
• Cool, safe, nurturing environment & sustainable community, with
9,000 sq metres for residential homes & allied services
• Senior adult care & research opportunities

• Residence for adult PWAs in Sembawang, Singapore

• Costs S$19 million, started operations in April 2018
• Capacity of 180, complete with therapy facilities, sensory
rooms, library, gym, landscaped garden, etc.
• Another one in Sengkang with capacity of 200 to be
completed in October (to be operated by SAAC)
• Like the SPED schools in Singapore, facilities are built by
government but are operated by VWOs/NGOs
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1. Executive Summary

2. Autism & Lifetime Challenges

3. Situation in Malaysia & Service Gaps

4. Proposed National-Level Solution

5. Care Farm/Intentional Communities

6. Sustainable SPED School in a Farm Project

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 1. Special Education &
Therapy Support

4. Integrated
Autism 2. Formal
Services, Employment/
Research & Vocation &
Teacher Support
Training

3. Informal, Farm &

Sheltered Employment &
Social/Respite Care

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 Local
Community

Volunteers &
Educational
Community
Establishments
Programs

Special
Education
School on
a Farm
Public Health
Recreations Establishments

Market Employers

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Sweetwater Spectrum Community

Exploring collaboration with Solar Energy

Research Institute (SERI, UKM) and other
green energy efficient & environment
friendly solution providers

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 Kem PLKN Setia Ikhlas Development Project
• Around 25 acres
• Capacity up to 100 students
• Day & week programs, weekend respite
• Up to 3 years lease
• Quick start up, lower start up cost
• Staff recruitment, training & development
• Volunteer programs

Interim solution

Selangor
Autism
Initiative

Purpose-built SPED school of life on a farm

• Preferably near a major town that can be made autism-friendly
• Land may be owned by special purpose foundation/land trust/organisation
• Takes longer to build & launch, estimate 3 years
• Construction excluding land, with residential facilities, estimated over RM30 million
• Movable assets include buses, vans, mobile clinic
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Selangor
Autism
Initiative
Perak
Autism
Initiative
Kedah Purpose-built SPED schools of life on farms
Autism • Replicate tested & proven model developed from the first
Initiative site in Selangor to selected states
• Land may be owned by different special purpose trusts/
Penang
foundations/organisations
Autism
• Support from relevant ministries & authories are required
Initiative
• A national/federal level support will add value
Sarawak • Dependent on ability of education system to produce
Autism adequate supply of SPED teachers, therapists & psychologists
Initiative • May lead to more/better innovation, technology & services
in this field but without government intervention may result
in more rent-seeking private providers such as in the
international school services
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To make it accessible/affordable to as many families of PWAs as possible, we propose the project to be a
government/public-social sector partnership (PSP)

Land to be placed under special purpose

foundation/trust for the purpose by land
owner who may be a state, federal
government or private individual or
corporate, to protect the cause & ensure
long-term continuity

Project to be planned & developed

together with key stakeholders – the
foundation/trust, national autism NGO
(NASOM), funder/donor as applicable,
and subject-matter experts, e.g.
stakeholder of successful, similar project

Like in Singapore & other countries,

particularly in the UK, NGO like NASOM
to be empowered to operate the facility
for the benefit of PWAs & their families
with sufficient regulation & supervision
by responsible authorities
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 Independent, non-profit special/vocational education service provider since 1987
 Education & employment/vocation are core strategy, SPED school for 7-19 year olds,
colleges for 16-25 year olds, post-education for youth & young adults 16+ years,
research & education program
 Practical skills therapeutic education for children & young adults from age 6 to 25, and
adults with complex behavior, learning disabilities, higher needs
 Day placement, residential programs, colleges, social care centres & supported living at
8 locations/colleges/farmsteads
 Holistic learning curriculum & role modeling in arts, crafts, commerce, agriculture/
farming, nutrition/bakery/cafe, woodwork, metalwork, glasswork, textile, pottery,
living skills & environment
 Community integration through work exposure, art/cultural events, festivals, etc. with
community involvement
 Recognised & regulated by relevant authorities such as Office for Standards in Education
(OFSTED), Care Quality Commission (CQC), Inspectorate for Education & Training in
Wales (ESTYN) and Care & Social Services Inspectorate Wales (CSSIW)

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Special education
Employment/vocation
Farming/agriculture
Social enterprises
Life skills
Social/respite care
Community programs

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 In addition to landowner/foundation/trust/funder

Ministries/ Agencies Hospitals Universities Non-Governmental

• JKM/JPOKU/KPWKM • UMMC/PPUM • UiTM Network • SG Enable

• MOH • Ramsay Sime Darby • Monash • German-Malaysian Institute
• MOE/Special Ed/Community • KPJ • Nottingham • Intl Parents Consortium
College/ TVET • Sunway Hospital • UPSI • Animals For Young
• KBS/ILKBS/IKBN/IKTBN • Other Nearby Hospitals • CUCMS • Green Apple Hippotherapy
• MOA/Vet Department • UKM SERI • Mydin
• MOHR • Other Nearby Universities • Giant
• KPKT
• Local Authorities

NASOM is establishing an Advisory Council for Autism & Special Education consisting of leading names known for
their expertise and extensive experience in the relevant fields such as Dr Karen Golden (Monash), Dr Norfishah
(UPSI), Dr Zasmani (consultant psychiatrist, NASOM parent) in preparation

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 To develop a pioneering SPED School of Life for PWAs on a farm in Selangor, the first of
its kind in Malaysia & ASEAN
 Interim facility up to 3 years
 Lease of Kem PLKN Setia Ikhlas, Semenyih for up to 3 years (25 acres)
 To accommodate up to 100 ‘students’ and 100 staff/caregivers/therapists/co-workers &
volunteers
 Day, week & month programs focusing on arts & crafts, café, music, farm work, and animal
assisted therapy
 Maximise use of existing facilities & minimise new construction

 Purpose-built facility target for completion by 2021-22

 Right to use a sizeable piece of land (at least 50 acres) on long-term basis (50 years)
 To be professionally designed based on successful model elsewhere in the world
 To accommodate 400-500 ‘students’ and appropriate number of staff/caregivers/therapists/co-
workers & volunteers
 To be professionally run by NASOM & partners with high service standards that may set a
benchmark for Malaysia
 To be accessible/affordable to as many PWAs & their families as possible

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Thank You

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