People With Special Needs: Children With Disability

FAMILY HEALTH SEMINAR
PEOPLE WITH SPECIAL NEEDS: CHILDREN WITH DISABILITY
GROUP 1
Group Leader: Gopi A/L Muniandy MQB170005
Mohd Ariff B Abd Rashid MQB170019 Song Ting MQB170040
Catherine Thamarai A/P Arumugam MQB170033 Lilyany Farhana Aziz MQB170042
Devi Peramalah MQB170035 Sabbir Ahmed MQB170043
Noor Ul Ain MQB170038 Nor Aziana Senin MQB170047
Zakia Sultana Happy MQB170050 Fathhullah Azmie B Nawawi MQB170041

What is Disability?
• Neither purely biological nor social.
• The interaction between health conditions and
environmental and personal factors.
• Some are born with a disabling health condition,
while others may experience a result of illness,
injury or poor nutrition.
Source: Early childhood development and disability: discussion paper. World Health Organization,
UNICEF. 2012

• Global Burden of Disease estimates a figure of around
975 million (19.4%) people globally with some disability.
• Estimated 190 million (3.8%) have severe disability.
• In Malaysia, NHMS 2015 records overall prevalence of
disabilities was 11.8%.
How many are they?
Source: World Report on Disabilty, WHO. World Bank. 2011

• 93 million children – or 1 in 20 of those aged 14 or younger
live with a moderate or severe disability of some kind.
(UNICEF, 2013)
• Department of Social Welfare, Malaysia:
- 2008: 170,455 registered children & adults
- 2012: 445,006 people (1.6% of population)
How many children?
Source: 1. The State of the World’s Children. UNICEF. 2013
2. Children with Disabilities in Malaysia. Mapping the Policies, Programmes, Interventions and Stakeholders.
Convention on the Right of the Child. UNICEF. 2014

• International Classification of Functioning, Disability and Health for
Children and Youth (ICF-CY) by WHO covers 4 main areas:
(i) Body: The nervous, visual, auditory and musculoskeletal systems,
(ii) Body functions: Physiological functions of body systems,
such as listening or remembering,
(iii) Limitations on activity: For example - walking, climbing, dressing
and
(iv) Restrictions on participation: Examples –
Playing with caregivers/other children,
performing simple chores).
Classification of Disability
Source: The State of the World’s Children. UNICEF. 2013

• Unit of classification in the
ICF-CY is not a diagnosis
for a child, but a profile of
its functioning
• Describe the nature and
severity of the limitations
of the child’s functioning
and identify the
environmental factors
influencing such functioning
Source: The International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)
The International Classification of Functioning, Disability
and Health for Children and Youth (ICF-CY)

1. A child is born with a fingernail missing. This malformation is
an impairment of structure, but does not interfere with the
function of the child’s hand.
2. Case of a diabetic child - the pancreas does not function
adequately to produce insulin.
3. Significant variation in intellectual development
is a mental impairment.
Case Examples: Limitation in capacity and
Problem in performance

Acquired brain injury,
spinal cord injury, spina
bifida, cerebral palsy,
cystic fibrosis, epilepsy,
multiple sclerosis,
muscular dystrophy,
Tourette syndrome,
dwarfism
Physical
Intellectual
Mental
Sensory
Depression, anxiety,
anorexia nervosa, bulimia
nervosa, PTSD, body
dysmorphic disorder
Fragile X Syndrome,
Down Syndrome,
Developmental delay,
Prader-Willi
Syndrome, Fetal
alcohol spectrum
disorder (FASD)
Autism spectrum
disorder, blindness,
hearing loss, sensory
processing disorder
Source: CDC, https://www.hwns.com.au/about-us
Categories of
Disabilities

Categories of Disabilities Eligible for Registration
as Persons With Disabilities in Malaysia
Hearing Vision Speech Physical
Learning
difficulties
Mental
Various
(Multiple
disabilities)
Source: Children with Disabilities in Malaysia Mapping the Policies, Programmes, Interventions and Stakeholders.

New Registration of Special Needs Cases 2012 –
Social Welfare Department, Malaysia
2013

New Registration of Special Needs Cases 2012 –
Ministry of Health, Malaysia
2013

Children Enrolled in the Special Needs Education System 2010-2012 –
Ministry of Education, Malaysia
More than 200,000 children with disability in the primary school population
gone unidentified?

What does the
numbers tell us?
Source: Singh A. Meeting the Needs of Children with Disability in Malaysia. Med J Malaysia Vol 63 No 1 March 2008

• In many countries, responses to the situation
of children with disabilities are largely limited to
institutionalization, abandonment or
neglect.
• These responses are the problem, and they
are rooted in negative or paternalistic
assumptions of incapacity, dependency and
difference that are perpetuated by ignorance.

• Unless this changes,
children with disabilities
will continue to have
their rights neglected;
to experience
discrimination,
violence and abuse; to
have their
opportunities
restricted; to be
excluded from society.

• Inadequate policies and standards:
- social protection, education policies
• Negative attitudes: beliefs and prejudices
• Lack of provision of services:
- health care, rehabilitation, support
• Problems with service delivery
• Inadequate funding
• Lack of consultation and involvement
• Lack of data and evidence
What are the disabling barriers?
Source: World Report on Disability, WHO. World Bank. 2011

“They are not a problem!
Rather, each is a sister,
brother or friend who has
a favourite dish, song or
game; a daughter or son
with dreams and the
desire to fulfil them; a
child with a disability
who has the same rights
as any other girl or boy”

Why we focus on children?
• Children with disabilities are among the most
vulnerable members of society.
• Childhood deprivations can have lasting effects.
• What is needed is a commitment to these children’s
rights and their futures, giving priority to the most
disadvantaged – as a matter of equity and for the
benefit of all.

CONGENITAL
ANOMALIES
BIOLOGICAL
FACTORS
NUTRITIONAL
FACTORS
SOCIAL &
CULTURE
ENVIRONMENTAL
FACTORS

CONGENITAL ANOMALIES
• Genetic & chromosomal abnormalities
• Result from chromosomal disjunction, a malfunction in cell
division
• Problems occur when there is an extra chromosome, or
when pieces or parts of chromosomes attach themselves to
other chromosomes
Down Syndrome

Fragile – X Syndrome
Tay Sachs Disease

COMPLEXITY OF INBORN ERRORS OF METABOLISM

Klinefelter’s Syndrome
Turner Syndrome

BIOLOGICAL FACTORS
Prenatal Perinatal Postnatal
• Infection - E.g., Rubella, chickenpox,
cytomegalovirus (CMV), and various sexually
transmitted diseases (such as AIDS,
Gonorrhea , Syphilis and Herpes) are some
common examples + Zika
• Prematurity - This is more common among
economically deprived mothers. In addition,
smoking, alcohol and various drugs increase
the likelihood that the baby will be
premature.
• Infection –
Meningitis,
Encephalisits
• Drugs - Prescription drug, Cocaine / Heroin,
Fetal alcoholism Syndrome (FAS)
• Difficulties during the process of labour, Birth
injuries: e.g., brain damage, Erb's paralysis
• Severe jaundice
• Age of the mother – Teenage; greater risk to
have babies with low birth weight and
neurological defects while over 40 years old;
chromosomal abnormality
• Neonatal infections: e.g., neonatal
septicemia, neonatal
meningitis
• Thyroid deficiency • Exposure to x-ray radiation - The greater
danger for malformation comes between the
2nd and 6th weeks after conception• Maternal smoking
• Consanguinity
• Oxygen deprivation - brain haemorrhage and failure to breathe are the main causes of oxygen deprivation (more likely to
occur with prolonged labour and birth asphyxia) resulting in motor deficits

Neonatal Rubella
Congenital Syphilis

• Teratogenic drugs: Teratogens
are drugs producing birth defects.
These may include:
➢Legal drugs (Nicotine, caffeine),
➢Prescription drugs (Certain
antibiotics such as tetracycline,
streptomycin, and sulfonamides,
Chemotherapy drugs,
Anticonvulsant/seizure drugs,
tranquilizers and anti-anxiety
drugs, Non- steroidal anti-
inflammatory,and
➢Illegal drugs (Cocaine, heroin,
marijuana)

Fetal Alcohol Syndrome
• Pre and post natal growth
deficits (less than 10th
centile)
• Facial dysmorphology
• Small palpebral fissures
• Smooth philtrum
• Thin upper lip
• Central nervous system
dysfunction

Causes of 2.68 million neonatal deaths during the
neonatal period in 2015, worldwide
Source adapted from WHO 2000-2015 child causes of death

LIFE COURSE APPROACH: THE PROPOSED CAUSAL LINKS

Source:
1. Victora et al, Pediatrics 2010: showing mean anthropometric Z-scores for weight for age, weight for length and height for age for 54 low
and middle income countries, 1994-2007, using WHO standards
2. Child Y. Infant and Young Child Feeding. Nutrition. 2011.

CONCEPTUALIZATION OF CHILD DEVELOPMENT

Luby JL, Barch DM, Belden A, Gaffrey MS, Tillman R, Babb C, et al. Maternal support in early childhood predicts larger
hippocampal volumes at school age. Proceedings of the National Academy of Sciences. 2012;109(8):2854-9.
• Higher behavioral and intelligence responses the more a mother is
there to nurture them - develop a larger hippocampus, the brain
region important for learning, memory, and stress responses
• Environmental deprivation has a debilitating effect on the
development of abilities such as language use, adaptive behavior,
and cognition

INJURIES
• In 2011, WHO estimates that over
630 000 children under the age of
15 were killed by an injury
World Health Organization (WHO). Child Injuries, 2018.
Available at http://www.who.int/violence_injury_prevention/child/injury/en/

World Health Organization (WHO). Child Injuries, 2018.
Available at http://www.who.int/violence_injury_prevention/child/injury/en/
• For every injured child who dies, there
are several thousand children who live
on with varying degrees of disability

World Health Organization (WHO). Global Status Report on Road Safety, 2015

POVERTY
• poverty are more likely to be suffered
from the childhood depression due to
altered brain connectivity patterns
• Poverty was associated with smaller
white and cortical gray matter and
hippocampal and amygdala volumes.
Source: Luby, Joan et al. “The Effects of Poverty on Childhood Brain Development: The Mediating Effect of
Caregiving and Stressful Life Events.” JAMA pediatrics167.12 (2013): 1135–1142. PMC. Web. 29 Mar. 2018.

UNICEF, press release, 27 March 2018. Available at https://www.unicef.org/mena/press-releases/yemen-children%E2%80%99s-
education-devastated-after-three-years-escalating-conflict
• At least 2419 children have
been recruited in the fighting
since March 2015
• Up to 78% of all Yemenis live in
poverty
• An estimated 1.8 million
children under 5 years and 1.1
million pregnant or nursing
women are acutely
malnourished (128% increase
since 2014)

“I’d rather die in Bangladesh
than be forced to return to
Myanmar,” Aisha, 19.
“They threw my son in the air
and cut him with a machete.
Then they threw petrol bombs
and burned down our houses.”
UNICEF. Rohingya refugee crisis: Children trapped in limbo and deprived of their basic rights, 19TH March 2018.
Available at https://www.unicef.org/infobycountry/bangladesh_100945.html

Did you know?
• Around one in seven people live with a
disability, says the World Health
Organization (WHO)
• Only 1 percent of the world’s people in
need of a wheelchair have access to one
• There are 360 million people worldwide
who could benefit from hearing disability
devices such as hearing aids or cochlear
implants
• In developing countries, less than 3% of
people who need hearing aids have them
• In developing countries, women and
children are less likely than adult men to
possess APs.

Never give up work.
Work gives you
meaning and purpose
and life is empty
without it…

Harry had never even imagined such a strange
and splendid place. It was lit by thousands and
thousands of candles which were floating in
mid-air over four long tables, where the rest of
the students were sitting.

These tables were laid with glittering,
golden plates and goblets. The hundreds
of faces staring at them looked like pale
lanterns in the flickering candlelight.

Tehse teblas rewe lait wit gliffering,
geldon pletas and globets. Teh hunsdrud
ot feces starring at thim looked lik pele
lentarns in teh fleckiring centlelighd.

IMPACT OF CHILDREN
WITH DISABILITIES

Factors Affecting The Impact Of Disability
Nature of the disability
Congenital
■ Requires less of an adjustment
Acquired disability
■ more likely to cause a negative
reaction than a congenital
disability.
■ Experience loss of abilities
■ Have to lean alternative access
methods
■ May not be able to learn or use
access methods up to their
potential
■ May experience multiple
challenges as a result of the
loss

Factors Affecting The Impact Of Disability:
The Individual’s Personality
The Meaning of the Disability to the
Individual

Factors Affecting The Impact Of Disability:
The individual’s current life circumstances

Factors Affecting The Impact Of Disability
The individual’s support system

How Attitudes are Formulated
1. Direct Experiences – direct, one-on-
one interaction with people with
disabilities in various social,
educational or personal contexts.
2. Indirect Experiences – the reflections
of popular media and how people
with disabilities are represented in TV,
radio, or literature. This affects
opinions, attitudes, and perceptions
of people with disabilities, especially
with those who have not had direct
experiences with people with
disabilities.
3. Reference Group – the ideologies and
views on disabilities inherited from
parents, peers, and society.

Stigma and Discrimination
■ Stigma: a set of prejudicial attitudes, stereotypes,
discriminatory behaviours and biased social
structures endorsed by a sizeable group about a
discredited subgroup of people deemed
dangerous, undesirable or unworthy
■ When an individual’s identity, or the social group of
which they are part, experiences stigma they are
negatively categorised by broader society
■ Their failure to conform to ‘mainstream’ ways of
communicating, behaving and participating results
in the generation of a marginalised, stigmatised
status through which they are defined as ‘other’
■ The primary drivers of negative attitudes in society
towards children with disabilities.
■ create barriers, deny dignity and challenging social
integration and equality
■ systemic isolation from mainstream social, cultural
and political opportunities and is a fundamental
barrier to the participation of children with
disabilities in society, increasing their invisibility
and vulnerability to exploitation

Stigma and Discrimination
■ While “stigma” is an attitude or belief,
“discrimination” is behavioral because
of those attitudes or beliefs.
■ Discrimination occurs when individuals
or institutions unjustly deprive others
of their rights and life opportunities
due to stigma.
■ Discrimination may result in the
exclusion or marginalization of people
and deprive them of their civil rights,
such as access to fair housing options,
opportunities for employment,
education, and full participation in
civic life.

Impact on the Individual
Lifestyle
Accessibility
■ "ability to access" the functionality, and possible benefit, of some system or entity
and is used to describe the degree to which a product such as a device, service,
environment is accessible by as many people as possible.
Urban design

Lifestyle Lack of
accessible
transport

Lifestyle
Building designs Assistive Technology

Lack of participation in activities
Barriers to Participation
• The range and diversity of special needs requires a
detailed review of student in planning each activity
• Concern about risk and liability for injury to self or
others
• The interests and perceived incompetence of the
child
• Lack of staff expertise
• School waiver procedures
• Lack of physician support
• Lack of social support
• Cost
• Safety concerns
• Need for special equipment or facilities

Health
■ Limited access to health services
■ Children with special needs are about twice as
likely as other children to be overweight or
obese
■ children with disabilities have a greater chance
of developing mental health problems than
children without disabilities
■ Overlooked in HIV and AIDS programs
■ Limited access to water and sanitation

Education
Access to Education
■ Only 10% of all children with
disabilities are in school
■ Only 5% of all children with
disabilities worldwide have
completed primary school.
■ Children with disabilities in
rural areas and poor urban
neighbourhoods are
particularly at risk of not
receiving an education.

Education Barriers to education
■ Discriminatory legislation
■ Parents have low expectations; give priority to children
without disabilities
■ Stigma, prejudice and bullying on the part of teachers,
parents and other children.
■ physically inaccessible and including inaccessible
hygiene and sanitation facilities, systems for
enhancing communication, appropriate equipment and
materials, and transportation.
■ Lack of resources, lack of teacher and parental
support and lack of awareness of the importance for
education
■ Tertiary education: students with disabilities are often
restricted in what they are allowed to study.

Financial Impact of Disability
■ Poverty may increase the likelihood of disability and may also be a consequence of
disability
■ Direct monetary costs:
– expenditures on health care, therapeutic, behavioral, or educational services
– Transportation
– Caregivers
– other special needs services.
■ Indirect costs:
– Loss of parents’ productivity due to additional time required to care for a child with
a disability combined with high costs or unavailability of adequate child care.

Violence, Abuse, Exploitation and
Neglect
■ Children with disability associated with mental illness or intellectual impairments appear to be
among the most vulnerable, with 4.6 times the risk of sexual violence compared with their non-
disabled peers.
Risk factors
■ stigma, discrimination, and ignorance about disability
■ lack of social support for those who care for them.
■ Placement of children with disabilities in institutions also increases their vulnerability to violence.
Children with disabilities are:
• 3.7 times more likely than non-disabled children to
be victims of any sort of violence;
• 3.6 times more likely to be victims of physical
violence; and
• 2.9 times more likely to be victims of sexual
violence.

Impact on the Family
Partnership stability and marital quality
■ negative impact on the couple’s relationship, causing
conflicts that decrease satisfaction with the quality of the
relationship, potentially leading to separation or divorce.
■ It is the mother who most often remains alone with the
disabled child and his/her siblings (if any)
Number of siblings
■ parents may decide to devote their energy to the disabled
child and the older siblings, rather than having any
additional children.
■ On the other hand, if the disabled child is the first born,
the parents may want to have another child to provide the
disabled child with a sibling and potential future form of
support.

Impact on the Family
Health status and well-being of family members
■ stress from these added demands of disability in family life can negatively affect the
health and functioning of family members
■ increased rates of physical ailments (including acid reflux, headaches, and
pain/aching), increased tendency to develop serious illness, and have high levels of
obesity and bodily pain.
■ diminished immune response, which leads to frequent infection and increased risk of
cancers.
■ Family resilience:
■ Many families actually report that the presence of disability has strengthened them as a
family—they become closer, more accepting of others, have deeper faith, discover new
friends, develop greater respect for life, improve their sense of mastery, and so on.

Impact of Disability on Siblings
■ Multiple difficulties
– greater risk than average of developing emotional issues,
anxiety, and stress.
– peer problems, lack of engagement in extracurricular
activities and academic issues as a result of limited time
and money.
■ Siblings become overly responsible and independent
■ May feel neglected by parents
■ Feel in the dark from parents and service providers
■ Mixed emotions :Guilt, resentment, anger, jealousy,
embarrassment
■ Positive Characteristics:self-control, cooperation, empathy,
tolerance, maturity, protective attitude

Impact of Disability on Society
■ Disability may lead to a lower standard of living and poverty through lack
of access to education and employment, and through increased
expenditure related to disability.
■ Disability is a development priority.
– high prevalence in lower-income countries
– disability and poverty reinforce and perpetuate one another
■ Disability is also a human rights issue.
– Adolescents and children with disability experience stigmatization,
discrimination and inequalities; they are subject to multiple
violations of their rights including their dignity, for instance through
acts of violence, abuse, prejudice and disrespect because of their
disability, and they are denied autonomy.
■ Disability is a global public health issue.
– people with disability face widespread barriers in accessing health
and related services, and have worse health outcomes than people
without disability.

Be Altruistic
- Death with dignity
KEVIN G
PRO-CHOICE ACTIVIST

Child Euthanasia
– The good death

"that an average annual removal of
700,000-800,000 of the weakest of a
million babies meant an increase in
the power of the nation and not a
weakening“
- Adolf Hitler

Familiar Tune...
Parents Want to Euthanize Their Six Disabled Children:
“I’m Tired of Taking Care of Them”
TEXAS RIGHT TO LIFE JUN 19, 2015 | 12:02PM
NEW DELHI, INDIA
Mother wins case to kill her disabled daughter
By Cassy Fiano | October 27, 2014 , 04:37pm

It’s neither easier for parents
 “It took too long. You’re not giving any fluids to the child, she was really very, very
skinny when she died. The Monday before she died, you saw the pain coming
back on her face.”
-mother of child diagnosed with Krabbe disease, a genetic disorder

"It can be that I feel very, very bad, I get an epileptic attack, I cry, I scream because of pain.
I need a lot of painkillers, valium, morphine.
-Marieke Vervoort

 Why these infants should be killed...

• Cost 3x higher1
• Spend up to 51 hours each week
• Divorce rate 10x higher2
1. Dobson B, Middleton S. The cost of childhood disability. York: YPS for the Joseph Rowntree Foundation;
1998. Paying to care.
2. Namkung EH, Song J, Greenberg JS, Mailick MR, Floyd FJ. The relative risk of divorce in parents of
children with developmental disabilities: impacts of lifelong parenting. American journal on intellectual
and developmental disabilities. 2015 Nov;120(6):514-26.

 Bioethicist Peter Singer argues that some [people] are a burden on
society and that it is morally right and just to kill them.
 "People with chronic conditions account for a disproportionately
large share of health care use, both services and supplies."
founder of the Hemlock Society, Derek Humphry
 Groningen Protocol

“Persons with disabilities” or “disability” are specifically
mentioned in the 2030 Agenda for Sustainable
Development ??

Aren’t we have enough role ?
 “With a special needs child, a parent has to learn
to be patient, to be a nurse, to be a lawyer
because I have to be a good mediator for all the
things that happen to my child.”
—Mother from Omaha, Nebraska

• 11 Essential Public Health Functions
•Population health
•Plan of Action: Health Care For PWD 2011-20201
• VISION : Equity in health care for PWD
• MISSION: Ensure a comprehensive health care for
PWD at all levels of care
Public Health Significance
Sources :
1. Making the Rights of PWDs Reality: Current status of services for children with Autism and Opportunities on Health Policies; (1 st National Conference on Autism &
Inclusion – Supporting Families & Engaging Professional) : 1st April 2017

I’m differently abled;not disabled.

Lev Vygotsky
Dystogenesis
• Primary & Secondary Defect
• ZPD
Learning & Development
• Develop differently
• Languange
Alternate mean

Prevention strategies
Primary
• Prevent
underlying
impairment
Secondary
• Prevent
activity
limitations
Tertiary
• Prevent
participations
restrictions

Family
• Nutrition (“Think Nutrition First”)1
• Men’s role
Community2
• Iodine Deficiency
• Immunization
• Prevention and Control Programmes for Blindness (1996) & Deafnesss (2003)
• Violence and Injury Prevention Programme (2007)
Sources :
1. Hanson MA, Bardsley A, De‐Regil LM, Moore SE, Oken E, Poston L, Ma RC, McAuliffe FM, Maleta K, Purandare CN, Yajnik CS. The International Federation of Gynecology and Obstetrics (FIGO) recommendations on
adolescent, preconception, and maternal nutrition:“Think Nutrition First”. International Journal of Gynecology & Obstetrics. 2015 Oct 1;131(S4).
2. CONFERENCE ON INCHEON STRATEGY 2013 – 2022 : A new decade for persons with disabilities in Malaysia

Family
• Awareness & Education
Community
• Primary health care
• Early detection & Early Intervention1
• Child growth assesment
Source
1. Parry TS. The effectiveness of early intervention: a critical review. Journal of paediatrics and child health. 1992 Oct 1;28(5):343-6.

• Power
• Self Image
• Access
• Moral
• Learning
• Options
• Growth
• Positive Thinking

Child
• Healthcare access
Family
• Coping mechanism
Community
• Job placement
• Safe and accesible environtment
• National Act ( Child Act & PWD Act)

Family Health Development Division, MOH

• Live , Laugh & Learn
& keep the child within you alive ..
Therapy is play;Play is Therapy

Let’s sing along
• If you're happy and you know it, clap your hands (clap clap)
• If you're happy and you know it, clap your hands (clap clap)
• If you're happy and you know it, then if you really want to show it
• If you're happy and you know it, clap your hands. (clap clap)
• If you're happy and you know it, stomp your feet (stomp stomp)
• If you're happy and you know it, stomp your feet (stomp stomp)
• If you're happy and you know it, stomp your feet. (stomp stomp)
• If you're happy and you know it, shout "Hurray!" (hoo-ray!)
• If you're happy and you know it, do all three (clap-clap, stomp-stomp, hoo-ray!)
• If you're happy and you know it, do all three (clap-clap, stomp-stomp, hoo-ray!)
• If you're happy and you know it, do all three. (clap-clap, stomp-stomp, hoo-ray!)

People With Special Needs: Children With Disability

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