REPORT ON BASELINE RESEARCH, COMPILATION AND ANALYSIS ON

CHILDREN WITH DISABILITIES

1. BACKGROUND TO THE STUDY

1.1 Objectives of the Report

This report was commissioned by Families in Action through its collaboration with the Inter
American Development Bank to undertake a study on the nature and incidence of developmental
disabilities that can inform and influence prioritization and resourcing on this issue in the
national development agenda. The main objective was to compile a comprehensive baseline
research document of the quantitative and qualitative status and scope of children with
disabilities in Trinidad and Tobago through the following activities:

 To examine and outline the issues of societal stigma, marginalization, and exclusion of
children and persons with disabilities in the school and workplace, thereby creating a base of
solid information for identification and systematic treatment.
 To establish a clear link between disabilities (visible and invisible) and the various negative
social issues being experienced in the country, e.g. crime and violence, teenage delinquency,
indiscipline, bullying, fighting in schools, vagrancy, homelessness, lack of productivity, etc.
 To outline the indisputable benefits of the earliest intervention and treatment and the dire
consequences of ignoring such an alarming situation.
 To inform research, social and national policy objectives and public awareness campaigns to
draw attention to the situation and effect sustainable transformation.

With the exception of Jamaica, regional research on children is usually focused on older
children, many of whom display deviant attitudes, sexual habits and/or risk-taking behavior that
endanger societal norms and values (Barrow et al, 2008). Based on the perspective that many of
these behavioural issues emerge during the period of early childhood (0 to five (5) years), this

1
report assesses the causes and impacts of developmental disabilities during the life course and
the requisite intervention strategies.

The report includes the analysis of a pilot study conducted on a small sample of children through
the Child Development Clinic of the North-Central Regional Health Authority. The following
sections provide the context for the discussion on children with disabilities.

2. MAINSTREAMING DISABILITY INTO THE DEVELOPMENT AGENDA

2.1 The Definition and Measurement of Disability

2.1.1 Medical and Social Models of Disability

Disability is defined as a physical, mental, or psychological condition that limits a person’s

activities (Mont, 2007). This medical model of “disability” has been replaced by the social model
which is perceives as a result of relationships or interaction “of a person’s functional status with
the physical, cultural and policy environments” (Hughes et al, 1997). Based on this definition,
interventions for the disabled occur not only at the individual level as through a health
institution, but contextually, with the inclusive design of physical infrastructure, education, and
other critical aspects in the wider society.

The World Health Organization developed the International Classification of Functioning,

Disability and Health (ICF) 1, as a measurement of functional capacity at the individual and
population levels. The ICF considers the role of individual and environmental influences, by
mainstreaming the perception of disability as something that could happen to every human being
who faces a decrement in health. This paradigm shift from cause to impact gives equal regard to
all health conditions and allows comparison by a common standard for health and disability.
Figure 1: International Classification of Functioning, Disability and Health Model

1
The ICF was officially endorsed by all 191 WHO Member States in the Fifty-fourth World Health Assembly on
22/02/01(resolution WHA 54.21). Unlike its predecessor, which was endorsed for field trail purposes only, the ICF
was endorsed for use in Member States as the international standard to describe and measure health and
disability.

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 Health Condition (disorder/disease)

Body Function & structure Activities Participation

(Impairment) (Limitation) (Restriction)

Environmental Factors Personal Factors

Each ICF component represents “a different manifestation of disability which is defined in

relation to the aspects of physical, personal and social functioning affected (Simeonsson, 2003).
The ‘Body Functions’2 component includes the “physiological functions of the body system
(including psychological functions)” (WHO, 2001). Any problems in the Body Functions and
‘Body Structures’3 components are described as impairments. Within the
‘Activities/Participation’4 component, activity is defined as “the execution of a task or action”
while Participation is “involvement in a life situation”. Therefore any problems in these areas are
identified as “activity limitations and participation restrictions” (Ibid). ‘Environmental’ 5
components include “the physical, social, and attitudinal environment in which people live and
conduct their lives” (Ibid).

2
The Body Functions covers eight (8) major body systems: Mental; sensory; voice/speech; cardiovascular,
haematolgogical, immunological, and respiratory; digestive, metabolic, and endocrine; genitourinary and
reproductive; neuromusculoskeletal and movement-related functions; and skin-related structures (WHO, 2001).
3
Body Structures components include the “anatomical parts of the body such as organs, limbs and their
components” reflecting the Body Functions and providing the “codes” for structures of the body system (Ibid).
4
Within this component there are nine units, including learning and applying knowledge; general tasks and
demands; communication; mobility; self-care; domestic skills; interpersonal and relationships; major life areas; and
community, social, and civic life (Ibid).
5
There are five spheres of the Environment including products and technology; the natural environment; support
and relationships; attitudes; and services, systems, and policies (Ibid).

3
The ICF model provides the lens through which disability is perceived by function rather than
medical diagnosis or aetiology. Interventions for children must consider the child’s “interaction
with the environment as the unit of assessment and the designs of programmes of support and
treatment based on his/her profile of functioning defined by Activities and Participation”.
Corresponding treatment of the Environmental factors can then be applied. These interventions
must therefore not seek to cure impairments, but promote “health, functioning and
development” (Ibid).

In Trinidad and Tobago, as with other countries in the region, there is very little data on the
prevalence of disability. Alternatively, policymakers and planners have resorted to the
international estimates6 that fail to define the spectrum of impairments, disabilities and/or
developmental delays. Implementation of interventions is therefore weak due to the lack of a
comprehensive system of data collection – quantitative and qualitative – which stymies
evidence-informed planning, programming, service evaluation and resource development
(O’Toole, 2001).

Global statistics indicate a decline in the rates of neonatal and postnatal mortality in the under
five (5) years age group in many developing countries. Subsequently, the period ‘beyond
survival’ or the early childhood stage has received increased attention as the crucial stage of
cognitive development at which physical, psychological, and mental growth occurs. This period
of the life course is best to capitalise on any developmental issues and mitigate or alleviate
present and future disabilities and/or related secondary conditions (Simeonsson, 2003).

2.2 Challenges to the Developmental Potential of Children

2.2.1 Social Determinants and Early Childhood Development

In many developing countries, at their earliest stage of development children are being exposed
to multiple risks – poor nutrition, poverty, poor health and home environments – which
negatively affect their cognitive, motor, and social-emotional development (Grantham-McGregor
et. al, 2007). These critical deficits increase the likelihood of poor outcomes among children.
6
A 1991 study found that the prevalence rates of disability in Trinidad and Tobago was estimated at more than 16
percent (O’Toole, 2001).

4
Researchers describe the “synergistic effects of poverty and chronic conditions or impairments”
and the ensuing need to reduce their presence (Simeonsson, 2003). These effects magnify
among mothers, and their infants and children with disabilities. Indeed, early childhood
development could be affected by early life factors and experiences which underlie the social
determinants of health7 (Maggi et al, 2005).
Figure 2: The Social Determinants of Health

Source: World Health Organization. 2005. Towards a Conceptual Framework for Analysis and Action on the Social
Determinants of Health. Commission on the Social Determinants of Health, World Health Organization, Geneva, Switzerland.

Social determinants are an important component in the early stages of conception, pregnancy,
and the post-natal stages of a child’s development. The sensitive stages of brain and biological
development begin pre-natally, continuing through childhood and adolescence. During this
process of development, the social environment in which a child lives and learns often dictates
the quality of stimulation, supports and nurturance s/he receives. Therefore, at school age, three
integral levels - the family, neighbourhood/village, and the wider society - have already
influenced a child’s healthy development. Accordingly, the social environment is a major

7
The Social Determinants of Health refer to specific features and the pathways through which societal conditions affect health
and that potentially can be altered by informed action. Such examples are family structure, education, occupation, income,
service availability, social support, sanitation, exposure to hazards, racial discrimination and access to resources linked to
health. N. Krieger. 2001. A glossary for social epidemiology. J Epidemiol Community Health, Volume 55:693-700.

5
determinant of early childhood development, the latter that is a determinant of health, well-being
and skills during the remainder of the life course (Ibid).

2.2.2 Neighbourhood Effects and Child Development

In recent years, the role of neighbourhood effects8 on children's well-being is an area of
significant discourse in international social research and policy communities. In many
underserved communities, poor families face the critical issues of safety, cohesion and the
presence or threat of ‘ghettoisation’. Here too, the development potential for children who live
in such communities and in conditions of extreme poverty is exacerbated. Consequently, their
outcomes are often low academic achievement, low incomes, higher fertility rates, poor
parenting patterns and possible perpetuation of intergenerational poverty (Grantham-McGregor
et. al, 2007).

Several Caribbean researchers have proposed a relationship between these social issues and
youth delinquency and aggressive behaviours, and increased levels of crime and violence.
Alternatively, researchers have also concurred that the elaboration of child rights in this context
is not compatible with idealised and traditional cultural norms. These traditional norms have
determined the definition of the ‘model family’ and the perceptions of ‘family breakdown’.
Significantly, these perceptions have influenced the policy responses and quality of service
delivery to children with developmental disabilities and their families.

8
In health research, the terms neighbourhood and community have often been used loosely to refer to a person’s immediate
residential environment, which is hypothesized to have both material and social characteristics potentially related to health.
The more generic term area has also been used. Clear distinctions between the terms neighbourhood, community, and area are
usually not made. Administratively defined areas have been used as rough proxies for “neighbourhoods” or “communities” in
many studies. Investigation of whether and how neighbourhood factors affect health may lead to more effective public health
strategies. However, inclusion of “neighbourhood-level” factors in epidemiology is also plagued with potential pitfalls. These
pitfalls have to do with unintended reductionisms or simplifications in the ways in which “neighbourhoods” are incorporated
into epidemiologic models of disease causation and quantitative analyses.

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2.3 The Legislative and Policy Framework

According to the United Nations, there are approximately 650 million persons with disabilities in
the world or ten percent (10%) of the global population. Eighty percent (80%) of these persons
live in developing countries, and are disproportionally represented among the poor (Commission
for Social Development, 2007).

The United Nations Convention on the Rights of Persons with Disabilities (CPRD) has become
the first human rights convention for the 21 st century. The Convention is not only a human rights
instrument, but provides a very clear social development perspective. Given these circumstances,
it is important that disabilities are part of inclusive planning of development activities and
integrated into a country’s national development goals.

2.3.1 The Rights of Children with Disabilities

The CPRD addresses the civil, political, social, economic and cultural rights of the disabled and
defines a shift in the approach regarding the ‘special needs’ of children as outlined in Article 23
of the United Nations Conventions of the Rights of the Child. While all Articles pertain to
children with disabilities, Article 7 seeks “...to ensure that the best interest of the child is a
primary consideration and to provide disability and age-appropriate assistance to ensure that
children with disabilities are able to realise the right to their express views on matters of
concern to them and have them taken seriously in accordance with age and maturity...”9.

While the provisions within the new Convention apply to children and adults, there are also
additional measures included to address the specific situation of children. These include the
following areas:
9
During the 4-year period of its revision, the Chair of the Ad Hoc Committee in charge of the Convention  encouraged a
‘paradigm shift’ in the perceptions, attitudes and behaviour towards people with disabilities – from objects of charity to
individuals with human rights. According Gerison Lansdown (2008) that “people with physical, psycho-social, intellectual
or sensory impairments face many barriers that prevent them from full and effective participation in society on an equal
basis with others...[and] physical, linguistic, social and cultural barriers must be removed. The focus should no longer be on
addressing the ‘special needs’ of children – the approach embodied in Article 23 of the Convention on the Rights of the Child...
[instead] it should be on the realisation of their rights. The Convention recognises that a change of attitude in society is
necessary if persons with disabilities are to achieve equal status, and includes a specific Article on awareness-raising to promote
respect for the rights and dignity of people with disabilities. However, the Convention in its entirety is dedicated to achieving
that change...The Convention will finally ensure that countries will no longer be allowed to relegate children with disabilities to
the margins of society. Governments that ratify it will be legally bound to treat them as subjects of the law with clearly defined
rights...” [http://www.crin.org/resources]

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 Children with disabilities should have full enjoyment of all human rights on an equal
basis with others.
 Respect for the evolving capacities of children and their right to preserve their identities.
 Children with disabilities must be consulted when States Parties are developing and
implementing legislation and policies.
 Article 7 on children with disabilities specifically introduces obligations to ensure that the
best interests of the disabled child as a primary consideration. This Article outlines the
need for States to provide disability and age appropriate assistance to ensure that such
children are able to realise the right to express views on all matters of concern to them
and have them taken seriously in accordance with age and maturity.
 Age appropriate measures must be introduced to ensure that children with disabilities
have access to justice.
 Measures must be taken to provide age-sensitive assistance to prevent exploitation,
violence and abuse; age, gender and disability sensitive protection and rehabilitation
services; and child-focused legislation to ensure that exploitation, violence and abuse is
identified and investigated.
 Measures must be taken to ensure that children with disabilities are registered
immediately after birth.
 Children with disabilities are entitled to retain their fertility, thereby prohibiting
sterilisation.
 Children with disabilities have equal rights with respect to family life and States Parties
have an obligation to provide services and support to families to prevent abandonment,
concealment and segregation. In addition, children with disabilities must not be separated
from parents unless this is in their best interests and never on the basis of disability.
Where parents are unable to care for children, efforts must be made to provide alternative
care within the wider family or within the community in a family setting.
 Inclusive education system that recognises equity and entitlement for children with
disabilities and provides all necessary support and technical aids, including respect for
linguistic identity, and facilitating the learning of Braille, orientation and mobility skills,
and training of teachers.

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  Children with disabilities must be provided with equal access to participation in play,
recreation, and leisure and sporting activities, including in schools.

The drafting process of the Convention involved the participation of not only disabled persons
and children, but that of non-governmental organisations all of whom were instrumental in the
formulation of the final document. The role of NGOs is significant in that they are often the
strongest advocates. Indeed, it is through their future influence and other civil society
stakeholders that awareness is made about the Convention and used to amend policy to respond
to the needs of disabled children, their families and the people with whom they interact.

2.3.3 The Policy on Persons with Disabilities

The Government of Trinidad and Tobago has given its commitment to provide the framework for
integration of persons with disabilities into the social development agenda. The policy objectives
include the following:

 “To create a social and physical environment favouring the integration and full
participation in society of children, youth and adults with disabilities
 To encourage self-reliance and to promote involvement and participation of persons
with disabilities in the country’s socio-economic development
 To eliminate marginalization and discrimination of persons with disabilities
 To provide opportunities for a better quality of life for persons with disabilities
 To encourage and support continuous research projects in related areas.”

The Government has identified its legislative and administrative arms as pivotal for
strengthening the institutional arrangements required to meet these objectives. The following
paragraphs present these arrangements within the areas of prevention, and education and
training.

a. Prevention

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The policy proposes several preventative measures to “…reduce or eliminate the disabling
effects of much impairment” through collaboration with relevant agencies. These measures
include the following:

 The establishment of an early intervention programme to detect children at risk of

disability at both the pre-natal and post-natal
 The immunization of all children against all diseases known to be responsible for
disabilities
 The mandatory screening of all children from birth to five (5) years to detect
disabilities so that corrective action can be taken
 The provision of public education and counseling in pre-natal, maternal and
child health care and family planning
 The establishment of programmes conducted by multidisciplinary teams of
professionals for early detection, assessment and treatment of impairment, for
persons with disabilities, their families and organizations concerned with
disability issues.
 The development and implementation of education programmes in proper
nutrition
 The conduct of training courses in safety procedures to prevent accidents in the
home, workplace, on the road, etc. which may result in disabilities
 The adaptation of workplaces to prevent the existence of conditions which lead to
occupational disabilities and diseases
 The dissemination of information on areas such as genetic screening, counseling,
effects of sexually transmitted diseases and the causes of disability to prevent
such occurrences and facilitate early detection and impairments
 The provision of specialised medical care to persons with disabilities within the
regular health system.”

b. Education and Training

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The Government has defined the need for intensive collaboration with non-government and
relevant public sector agencies towards the provision of equal educational opportunities for the
disabled. These measures include the following:
 The creation of opportunities for all children with disabilities to be educated
 The inclusion, as far as possible, of children with disabilities into the regular
school setting with adequate and appropriate support services beginning at
the pre-school level
 The provision of appropriate teaching aids and supports to enhance the
methodology of teachers
 The development of modules in the curriculum at pre-school, primary and
secondary school, wherever relevant, to instill in school children, respect for,
acceptance and tolerance of the differences among persons
 The modification of existing adult education programmes to ensure
participation of persons with disabilities at the community level. In the event
that regular programmes are not appropriate, special courses will be
organised
 The establishment and upgrading of institutions involved in training persons
with disabilities for productive employment and for creative employment
 The involvement of parent groups and organizations of/and catering for
persons with disabilities in the education process at all levels
 The establishment of facilities, where feasible, for persons with severe or
multiple disabilities who cannot be integrated into mainstream schools.”

The policy also discusses the need for compulsory training for health professionals, social
workers, community workers, teachers and other caregivers concerned with persons with
disabilities. These measures are as follows:

 “Educational and vocational needs

 Early detection measures
 Counselling of persons with disabilities and their families
 Referrals and follow-ups

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  Providing for the development of persons with disabilities
 Rehabilitation techniques
 Nutritional requirements
 Special education.”

Additional measures proposed include:

 Incorporation of specialized training modules into the teacher training curriculum and at
tertiary level institutions
 Co-operation with civil society organizations concerned with the disabled to create
appropriate training opportunities for these clients; and
 Creation of vocational skills and training opportunities, for youths and adults with
disabilities.

The policy also offers measures within the following areas: Rehabilitation, public awareness,
access to built information and communication, employment, technical aids and equipment,
housing, income maintenance and social security, family life, recreation, culture and sports,
policy planning, international cooperation and review and evaluation. Cognisant of the need for
strategic policy and decision-making, the Government also proposed to conduct a national
survey and establish a database on persons with disabilities. The framers of the document were
careful to state that, “…several of the measures highlighted in the policy are both capital-
intensive and long-term in nature and will require funding on a large scale…”

Successful implementation of many of these measures has been ‘wide, but not deep’, the clear
result of a weakened evidence-informed policy development process. The recent passage of the
range of children’s legislation is a sign of progress. However, implementation and enforcement
continue to occur within the said areas of low competence and capacity. These and other limiting
issues would be discussed later in this report.

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3. LITERATURE REVIEW

This section will provide further insight into the myriad issues that contribute and influence the
situation of children with disabilities and their families.

3.1 Violence against Children with Disabilities

The findings of a UNICEF report on Violence against Disabled Children found that they are
perceived as easy targets and are at significantly increased risk of being victimised. The report
attributes the phenomenon to the issues of stigma, negative traditional beliefs 10 and ignorance.
Indeed, in many societies, the cultural, religious, and societal beliefs perceive those children born
with disabilities and/or those who become disabled after birth as cursed (UNICEF, 2005).

The risk of abuse increases for children born into families and communities that are socially and
economically marginalised. In these circumstances, the ‘neighbourhood effects’ may predict the
extent of social exclusion, participation and social integration of the disabled child in the life of
the community (Fisher et al, 2007).

3.1.1 Developmental delays as a Consequence of Abuse

Several studies have confirmed that abused children are at a greater risk for developmental
delays, even years after the abuse. Some researchers contend that developmental delays are less
visible in infants and manifest as they age and are unable to attain the expected milestones (The
Child Development Institute, 2008). A study conducted by the U.S. Department of Health and
Human Services identified several risk factors which could be associated with poor
developmental outcomes. These include minority status, single caregiver, poverty, domestic
violence, low caregiver education, biomedical risk condition, caregiver substance abuse,
caregiver mental health issue, teenaged caregiver, and the presence of four (4) or more other
children in the home.

10
According to the report, the researchers found that the recurring themes of stigma and discrimination were the basis for a
significant amount of violence against disabled children. While similar research is yet to be conducted in Trinidad and Tobago,
there is considerable socio-cultural evidence of the myths and superstitions and subsequent rites that are used to prevent or
heal a child born with developmental abnormalities.

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The study found that fifty-five percent (55%) of the children less three (3) years who
experienced abuse had at least five (5) of the risk factors associated with poor developmental
outcomes. The findings confirmed the risk for developmental delay for maltreated children even
years after the abuse and propose screening and early intervention services for all children
involved in the Child Welfare Services.

One Canadian study (Brown et al, 2004) proposes that developmental delay was the consequence
of maltreatment for some children, and that some children with development delays are likely to
experience maltreatment. In fact, the latter group is over-represented in the data with reports for
physical and sexual abuse. However, these children are also over-represented in cases of
emotional abuse and neglect.

3.1.2 Mothers at Risk of abusing Children, and Children with Disabilities

Studies have shown that in some cases, low-income children less than six (6) years of age with
behavioural and mental health conditions face increased risk of abuse and neglect (Kienberger et
al, 2008). The literature on this issue also finds that parents who are at high risk to physically
abuse their children often infer hostility in response to ‘ambiguous child cues’ (Farc et al, 2007).

An examination of the impact of adolescent mothers’ abuse potential on the development of pre-
school children found a relationship between developmental delays and adolescent motherhood
(Dukewich et al, 1999). The researchers determined two pathways for predicting development
delays. The first pathway linked child abuse potential with IQ and adaptive functioning, while
the second demonstrated that problematic parenting accounted for the development of emotional
and behavioural outcomes in early childhood.

There is also considerable research on maternal risk factors such as maternal depression,
domestic violence, non-domestic violence, incarceration, family size, single parenting,
homelessness, severity of drug use psychiatric problems and negative life events. A study
conducted on substance-abusing mothers (Schuler et al, 2003) found that compared with those
with less than five (5) of the maternal risks, women with five (5) or more risks found parenting
more stressful, and showed greater inclination towards abuse and neglect. This placed their

14
infants at increased for abuse, neglect and poor parenting. The researchers conclude that early
home-based intervention in such high-risk families may be beneficial to infant development.

3.1.3 The Incidence of Foetal Drug Injury and Foetal Alcohol Syndrome (FAS)

Early harm to the foetus and future disability often result through maternal alcohol or drug use
during pregnancy. Substances such as alcohol, tobacco, opiates and amphetamines are not
blocked by the placenta and may infuse the foetus at higher levels than that of the mother. The
extent of the damage and disability is also determined by the amount and type of substance that
is used.

According to the Centers for Disease Control, babies born with foetal alcohol syndrome (FAS)
may suffer delayed motor development, dysfunction of the central nervous system, learning
disabilities and mild to profound retardation. Children may also experience problems in
swallowing, and speech language and hearing development.

Early exposure to environmental tobacco smoke (ETS) can influence developmental delay and
increased risk of child health issues. The research literature identify the following that result
from ETS, including neuro-developmental issues, reduced foetal growth, respiratory diseases
such as asthma, cardiovascular disease and increased risk of cancer. Health issues may emerge
in early childhood but could also be manifested in adulthood (Miller et al, 2006).

In their examination of this health behaviour, researchers are also investigating the link between
psychiatric symptoms or disorders and tobacco use during pregnancy (Flick et al, 2006). They
propose that individuals with psychiatric disorders are more likely to use tobacco and in larger
amounts than the average user11. They conclude that many of the studies on psychiatric disorders
did not control for tobacco use, but those that did found a strong association between psychiatric
disorders and negative infant outcomes (Ibid).

11
This fact is substantiated in the statistics of the Child Guidance Clinic in which maternal psychiatric disorder
accounted for 8.3% of the children attending the clinic during the period 1998-2000 (Milbourn et al, 2005).

15
Unfortunately, self-reporting in tobacco and alcohol use during pregnancy is likely to be under-
stated however systematic testing during pre-natal health visits may help reduce the risk and
costs of future disability.

3.2 The Roots of Violence

There is extensive research on delinquency and youth violence in the Caribbean (Meeks-Garner
et al, 2007), (Samms-Vaughn et al, 2004), (Hutchinson, 2005). However, few attempt to link
early childhood aggression with similar adult behaviour. One study on community violence in
Jamaica proposes that environmental factors associated with aggression in children comprise
intrauterine factors, isolation, and neglect, physical abuse and pain and exposure to aggressive
adults (Coleman, 2006).

The study cites foetal exposure to “high gonadal hormones”, as having a strong association with
behavioural issues and aggression. The “genetically-determined Prader-Wilson syndrome” is
identified as the being conclusively associated with aggressive behaviour as part of its clinical
manifestation. However, the researcher was quick to dispel that the propensity for aggressive and
violent behaviour through other genetic relationships. The study concludes that given the stated
environmental risk factors, a public health12 response is required for the intentional and
unintentional determinants of violence and violent incidents.

In their work on aggressive and pro-social behaviour among Jamaican schoolboys (Meeks-
Gardner et al, 2007), the authors proposed that family characteristics were the most significant
risk factors for negative behaviour. Another study on urban violence in Jamaica found that
children were more likely to be witnesses to violence that occurred in their communities.
However, boys and children attending primary school had greater exposure to violence as
witnesses and as victims in the school environment (Samms-Vaughn et al, 2004).

12
The public health approach employs the social determinant model to examination of violence as a health issue.
In this model, health professionals are regarded as a technical resource to law enforcement agencies, the social
services, the legislature and community agencies involved in policy planning to deal with violence. (A. Coleman,
2006).

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3.3 Understanding Child Mental Health Issues

The issue of risk-taking and violence among children and young people was presented by
Professor Gerard Hutchinson during a series of train-the-trainer workshops organised by the
local NGO, Creative Parenting for the New Era 13. According to Professor Hutchinson, normal
brain development and functioning are essential for appropriate and adaptive human behaviour.
Using the ‘life course perspective’, he defined the impact of childhood adversities and
maladaptive parenting on a child’s relational functioning, which are manifested in the reduced
capacity of the child to achieve the following goals:

a. Problem-solving: Negotiation of goal achievement; Adaptability; Resolving conflict;

Communication.
b. Organisation: Maintenance of roles and boundaries; Respecting hierarchies; Control and
responsibility
c. Emotional Climate: Articulating feelings; Caring and empathy; Bonding and attachment;
Reciprocity of feeling; Sexual responsibility

Professor Hutchinson drew from his work with some five hundred (500) patients at the ante natal
clinic of the Mt. Hope Maternity Hospital. He said that thirty-eight (38) or seven percent (7%)
of the women surveyed were HIV positive, one half of them knowing their status before they
became pregnant. He found that the age of sexual activity (before the age of twelve (12) years)
distinguished these women from the group, therefore, their appreciation and understanding of the
risks that surround sexual activity was less.

Hutchinson then outlined some of the factors that influence early sexual activity. These include
the following:

13
Creative Parenting for the New Era (CPNE) is an organization born out of an alliance of Families in Action, the
Caribbean Conference of Churches and the Choices Network, all NGOs involved in working to ensure the well-being
of families. The common concern of these organisations is the breakdown in family life and its effects not only on
children but the community as a whole. The 2004 and subsequent workshops involved training of trainers in
parenting education based on a curriculum and methodology that were designed, delivered and evaluated by one
hundred and twenty-five persons (including school supervisors, principals, teachers, parents and young people
across Trinidad and Tobago) from a wide range of disciplines. The consensus among all participants is that the
training is empowering.

17
 a. Sixty percent (60%) of the children are abused by an adult in their environment –
relatives, a neighbour, family friend, etc. Accordingly, children’s capacity to articulate
sex at an early age derives from their environment. Their awareness of sex encourages
them to seek out another environment where the behaviour is reinforced. When the
parent is the perpetrator, mutual reinforcement occurs.

b. Using a Psychological Distress Questionnaire, he found that thirty percent (30%) of

the pregnant mothers in his study had psychological distress over the pregnancy. They
did not want the babies or were uncertain, and/or they did not have the capacity to
manage a baby due to abandonment by their parents or the baby’s father.

He also found that early motherhood increased the distress over the pregnancy and consequently
is strongly linked to future disruptive behaviour in children. Therefore, if a mother is
psychologically distressed, her hormonal changes impact on the baby and its brain development
is compromised. The impact is significant during the period of conception to two (2) years old
and affects the baby’s gross intellectual skills with subtle cognitive deficits that impair a whole
range of social functions.

Later, this affects the child’s ability to participate in the classroom, and leads to disruptive
behaviour with friends who reinforce each other – through bullying (of peers and teachers),
fighting, etc. Professor Hutchinson confirmed that these children could also be bright and
intelligent however their capacity to process words and information is hindered. He found that
children may also have developmental reading disorder. Here, these ‘bright’ children learn to
read by memory but not by understanding the words. In an environment where this problem is
recognised, these children suffer, which often leads to behavioural problems.

These subtle cognitive deficits in children may affect their capacity to perform the following
skills:

1. Problem-solving. The capacity to identify all components of a problem – from simple

tasks to academic work.
2. Understanding organisation. Logical thought and the understanding that one thing leads
to another, that is, to design routine/schedules based on their environment is limited, as is

18
 part of the developmental pathway in the brain. The earlier that this problem is identified
and targeted, the better the child could develop.
3. Emotional intelligence. The capacity to appreciate the reciprocity of emotion results in
failure to understand emotional cues and signals. There is also an inability to understand
or recognise the distress of others which affects relationships.

He surmised that these deficits may be apparent in children who are not functioning due to (a)
cognitive problems (be they marked or subtle); (b) marked psychological problems (c)
psychopathological problems including mental health issues such as Attention Deficit
Hyperactivity Disorder (ADHD). Professor Hutchinson said that ADHD is manifested in
children who experience the following behaviours:

a. Inability to pay attention and a short attention span

b. Impulsivity – inability to fill the gap between what wants feels to do and what is actually
done; the inability to control one’s actions and reactions.
c. Over-activity – constantly distracted and hyper-vigilant
d. Depression – acting out behaviourally including self-harm, lies, truancy, relationship
problems, and the inability to adapt to the environment.

Finally, he emphasised that there are parentary aspects to many of these behaviours, which
implies that parents should be analysed and treated as before or as well as their children.

19
3.3 The Environment and Health for Children and Mothers

The World Health Organisation (2005) states that in developing countries, environmental
hazards and pollution are instrumental in “childhood deaths, illnesses and disabilities from acute
respiratory disease, diarrhoeal diseases, physical injuries, poisonings, insect-borne diseases and
peri-natal infections”. Persons with lower incomes are more likely to live and/or work in
environments that expose them to toxins and other carcinogens (Washington State Department of
Health, 2002). Persons in the lower socioeconomic sectors of employment are also more likely
to face the risk of serious occupational injury, exposure to hazardous and dangerous substances.

The location and quality of housing stock are determined by parental income and could affect the
health of their children. Therefore, low
Compared with adults, children:
socioeconomic neighbourhoods including
informal and unplanned settlements may be
 Have a greater vulnerability to environmental situated near industrial sites in the proximity
exposures;
 Have immature mechanisms for detoxification of toxic waste and other potentially hazardous
and protection;
 Have several critical windows of vulnerability, environments (Ibid). Poor women and their
especially before birth;
 Have differences in metabolism that cause children and pregnant women who live and
different reactions to the same exposure;
 Spend more time on the ground and put objects in
work in such environments are at greatest risk.
their mouths.
Airborne lead, mercury in food and other
US Dept. of Health and Human Services. 2004. Growing chemical exposures result in long term and
Up Healthy: an Overview of the National Children’s
Study. Centers for Disease Control, National Institutes of
Health, US Environmental Protection Agency.
irreversible effects including infertility,
miscarriage, and birth defects. The impact of
exposure to pesticides, solvents and persistent
organic pollutants also affect the foetus through its mother (WHO, 2005). Babies may also be
exposed by high levels of contaminants in the mother’s breast milk.

Considerable research has been conducted on the effect of lead on child health and development.
Lead is one of the main contaminants which have been shown to be disproportionately dangerous
to children. Lead contamination is cumulative, and can lead to serious brain damage, lowered
IQs, and limits the ability to read and write. These findings are supported in a Jamaican case-
control study on the effects on psychomotor development on pre-school children in a lead-

20
contaminated community in Kingston (Meeks-Gardner et al, 1998). The results showed that for
those children that lived in poor households and were undernourished, lead exposure was more
detrimental when compared with children who were adequately nourished.

In summary, the preceding paragraphs illustrate some of the critical issues that must be
considered in any project or programme that seeks to provide comprehensive health interventions
for children with disabilities. The research indicates that while it is critical to identify the
disability at the individual level, the life course from birth to adulthood is influenced by the
extenuating circumstances (legislative, administrative, and policy environments) within the
family, community and the wider society.

4. HEALTH SERVICES FOR CHILDREN WITH DISABILITIES

In Trinidad and Tobago, referrals to the child clinics originate from health centres and other
hospital-based clinics, private health professionals, public and private primary and secondary
schools, non-governmental organisations, public and private social work practitioners, as well as
other institutions and individuals. The clients of the Child Development Clinic also include
infants referred from neo-natal care facilities of the San Fernando, Port of Spain and Mt. Hope
Maternity Hospitals and private health institutions.

Unfortunately, within the Ministry of Health and the Regional Health Authorities there is no
standardised, comprehensive or disaggregated system of data on child health. As a result, the
process of identification and assessment of attendance records of children in the relevant clinics
was difficult. These records were mostly handwritten, incomplete and sketchy and there was
extreme dissonance in the formatting from one clinic or department to another. However, access
to these records was facilitated by Dr. Natalie Dick of the Child Development Clinic who along
with her professional duties had attempted to create a preliminary database of children attending
her clinic.

21
Table 1 below illustrates the number of children and their families that access services at the
Child Development Clinic. These figures include both new and returning patients.

Table 1: Attendance at the Child Development Clinic for the period 2002-2007

YEAR
MONTH

2002 2003 2004 2005 2006 2007

JANUARY 55 50 N.G. 115 95 38

FEBRUARY 44 50 N.G. 86 91 70
MARCH 57 87 138 106 89 93
APRIL 59 47 89 122 84 119
MAY 60 96 109 104 101 N.G.
JUNE 45 63 127 73 94 81
JULY 76 131 87 102 105 106
AUGUST 61 106 112 98 111 106
SEPTEMBER 58 56 117 109 79 92
OCTOBER 38 117 51 82 82 127
NOVEMBER 48 109 110 87 83 98
DECEMBER 43 65 59 34 65 73

ADMISSIONS 7 3 4 6 2 20

TOTAL 644 977 999 1118 1079 1003

Based on records of children attending the Child Guidance Clinic (CGC) during the period 2002
to early 2008 illustrates that more than ten percent (10%) of the ninety-two (92) children are also
patients of the Child Development Clinic (See Table 2 below).

22
Table 2: Characteristics of Patients - Child Guidance Clinic (2002-2007)

PATHOLOGIES OF PATIENTS PERCENTAGE (%)

Pure Pathologies %

Mental retardation 19.4

Developmental Disorders 10.6

Conduct Disorder 10.6

Neurological Disorders 1.1

Emotionally Disturbed 5.3

Bi-polar Disorder 1.1

Co-morbid pathologies %

Emotionally Disturbed/Mental Retardation -

Emotionally Disturbed/Developmental Disorder 6.4

Emotionally Disturbed/Neurological Disorder -

Conduct Disorder/Emotionally Disturbed 1.1

Conduct Disorder/Developmental Disorder -

Conduct Disorder/Neurological Disorder -

Conduct Disorder/Mental Retardation 3.2

Mental Retardation/Neurological Disorder -

Conduct Disorder/Mental Retardation/Neurological Disorder 1.1

Undetermined Pathologies %

Deferred 23.4

Suspected mental retardation 1.1

Suspected developmental disorder 4.3

Suspected emotionally disturbed -

Suspected neurological disorder -

Suspected conduct disorder 2.3

23
 Suspected Co-morbid Pathologies

Suspected developmental disorder, dys-executive syndrome14 1.1

Emotionally disturbed, developmental disorder, suspected 1.1

mental retardation

Emotionally disturbed, suspected developmental disorder 1.1

Conduct disorder, suspected development disorder 1.1

Developmental disorder, mental retardation -

Emotionally disturbed, developmental disorder -

Conduct disorder, developmental disorder 1.1

Suspected mental retardation, emotionally disturbed 1.1

Emotionally disturbed, dys-executive syndrome -

The data show that children are not immune to mental disorders and their effects. In fact,
recognition of its importance is the first stage in dealing with the problems that could emerge at a
later stage. The Child Development Clinic serves children that present a range of developmental
issues - from mild to severe. Some aspects of the link between developmental delays and
behavioural and attitudinal issues among older children are clearly illustrated in the data above.

The role of social determinants of child development and behaviour was discussed in a study on
the Child Guidance Clinic (CGC) model in Jamaica and Trinidad and Tobago. The researchers
found that in the case of the latter, there are three CGCs whose services covered less than five
percent (5%) or only 4,687 of children in the country (Milbourn et al, 2005). The authors
identified the root causes of referrals to the Clinic as chronic family discord, domestic violence,
sexual abuse, crime and societal violence. As expected, the impact on children living in
underserved or poor circumstances is amplified. Further, the presence of maternal psychiatric
illness and substance abuse in the household were also characteristic of children referred to this
clinic (Ibid).

14
Dys-executive Syndrome - Impaired executive abilities, usually resulting from damage to the frontal lobes. These executive
abilities may include attention and concentration, planning and initiation, problem solving and monitoring of goal-directed
activities.

24
The effect of the disability is not limited to the child but also affects the families, and other
persons within their social environment. In many circumstances, the reaction to childhood
disability is negative, the result of stigma, discrimination and superstition based on cultural
values. As discussed earlier, these issues could lead to maltreatment, abandonment and neglect
by family members. The records of the San Fernando Neo-natal Clinic provides a few instances
where mothers have absconded, leaving their disabled infant (See Appendix 9). These negative
perceptions, attitudes and behaviours would best be transformed through the innovative
community-level strategies. This may include the involvement of parents in the screening,
assessment and rehabilitation of children with disabilities (Coore, 2004).

In Trinidad and Tobago, child health professionals continue to advocate for special priority to be
given to child and mental health services. When children are left untreated or not diagnosed, the
result is greater strain to the national resources and social support systems. This may also lead to
or “...cause discomfort to the child... [and]...problems in childhood that are not resolved carry
over and may worsen in childhood...” (Milbourn et al, 2005). Undeniably, the public emergency
in relation to mental health and behaviour that has been identified among infants, children and
adolescents in the USA and other high and low income countries are yet to be given similar
attention in Trinidad and Tobago (Ibid).

The earlier discussion on environmental risks and child health emphasises the need for
comprehensive national research and/or prevalence studies. The correlation between
environmental and air quality issues and child development may be supported by the neonatal
hospital data, in which the presence of congenital heart defects, abnormalities, etc., and
paediatric cancers is recorded (See Appendix 9). Additionally, while tobacco use legislation and
policy may deter maternal and general health behaviour and the ensuing effect on child health,
the planned implementation and enforcement of its aspects are ambiguous.

In Trinidad and Tobago, there has been limited progress in the development of inclusive social
programming that improves the quality of life for children with disabilities and their families.
Unfortunately, this fact is reinforced by problems of access faced by families of disabled
children to the various Government grants and benefits.

25
Finally, the Ministry of Health through its child clinics must have the primary responsibility for
early identification, screening and evaluation of children with developmental delays and other
impairments. While this report has not defined the clinics’ resource capacity in terms of health
personnel and quality of physical infrastructure, other sources indicate that they are in need of
institutional strengthening and upgrading of the necessary equipment.

Significantly, any proposed increase in coverage for interventions in prevention, screening

and/or family support services (through hospitals, health and early childhood centres or
community care programmes) must be reflected by a parallel increase in the number of relevant
health personnel and paraprofessionals.

26
OVERVIEW OF THE PILOT STUDY

5.1 Results of the Family Assessment

The pilot study comprised two components that dealt with the individual clinical child evaluation
and assessment of his/her family. This aspect of the study attempted to assess the relationships
between socio-environmental characteristics, parenting practices and child health (See Appendix
7, for full analysis). Despite the small sample, some of the results are supported by similar
research on infants and children with developmental disabilities.

The survey was administered to parents of the evaluated children, and comprised questions
within the following areas:

A. Parents’ demographic background

B. The household structure and composition of families with children of developmental
disabilities
C. Maternal and child health as well as access to health care
D. The parenting support that is available
E. The disciplinary measures taken by parents
F. Parent-child separation
G. Child care and social activities in which the child participates
H. The stress levels of parents dealing with children with developmental disabilities

There were nineteen (19) cases under study. The children with developmental disabilities ranged
between the ages two (2) months to six (6) years and two (2) months with the average age being
one (1) year, seven (7) months.

27
A. Demographic Information:

The average parent considered in the study was:

o Between the ages 20 – 29 years

o Married

o A high school graduate with no further qualifications

o Worked full-time

o Earned a combined (both parents) income of $500 - $900 per week

B. Household Structure and Composition

The average family in the survey:

o Comprised of four (4) members

o Had one (1) or two (2) children

o Had both parents living with the children

o The child’s father was the current partner

o Had their own house or was staying with family/friends

o Didn’t change residence within the past year

C. Maternal and Child Health

With regards to the birth of the child, the most common situation was:

o The child was delivered by a doctor

o Labour lasted less than 24 hours

o The child was delivered through C-Section

o The child was born at a public hospital

28
 o The child was five (5) lbs at birth

o The mother joined clinic before three months into the pregnancy

o An ultrasound was performed before birth

o The child was breastfed within days after birth

o The mother did not use prescription drugs or abused any substance

D. Access to Healthcare
In relation to healthcare, the average child:

o Received regular healthcare

o Was never refused healthcare by an institution

o Received no dental care

E. Parenting Support and

F. Discipline and Corporal Punishment in the Home
G. Parent/Child Separation
H. Child Care
The average parent:

o Never attended any took part in a parenting training program specific to the needs of
the child

o Never heard of any hotline support facility

o Experiences financial stress

o Does not seek financial assistance

o Disciplines the child

o Is away from the child everyday of the week for eight (8) hours or more

29
30
I. Parent/Child Social Activities and Interaction

In terms of social activities, the average family:

o Would take part in recreational activities no more than ‘Sometimes’

o Read to the child

o Told the child stories

o Sang songs

o Played games

o Took the child out (50%)

o Didn’t spend time with the child in learning activities

o Did no household chores with the child

o Didn’t teach the child religious practices

J. Parental stress:

In trying to determine the stress levels of parents dealing with children with
developmental disabilities, the average parent:

o Enjoyed being a parent

o Never felt as though she/he couldn’t cope with the situation

o Felt that their biggest concern was financial insecurity

31
5.2 Outcome of Paediatric/Developmental-Behavioural Evaluations

The medical evaluations were conducted by Dr. Natalie Dick in the Child Development Clinic. A
strong evaluation protocol for the nineteen (19) cases was maintained through the use of a pre-
determined format. Significantly, the protocol allows for the continued ethical follow-up,
clinical treatment and support for the children in the study. The following tables illustrate the
outcomes of the evaluations:

Table 3: Risk Factors of Developmental Delays/Disabilities

(Risk factors are not mutually exclusive)

Risk Factors # of Cases

Adverse birth events 5
Prematurity 4
Congenital Disorders 2
Injury 1
Severe Maltreatment/Emotional trauma 2
Severe Illness 6
Unexplained 1

Table 4: Outcome of Clinical Evaluations: Diagnostic Categories

(Some children have multiple diagnoses)

Diagnosis # of Children
Normal Growth 5
Failure to thrive 2
Normal Development 5
Global Developmental Delay 5
Visual Impairment (Functional) 3
Hearing Impairment (Functional) 3
Speech-Language Delay (Isolated) 5
Specific Condition: Autism 0
Specific Condition: Cerebral Palsy 3
Specific Condition: Down Syndrome 1
Chronic severe medical problem: Cardiac 1
Chronic severe medical problem: Cancer 1
School-related/Academic problems 1

32
 Table 5: Outcome of Clinical Evaluations: Follow-up required

(Some children require multiple modalities of intervention)

Category # of Children
Routine medical/developmental surveillance 5
Further tests (medical/other) 5
Re-visit needed 4
Referrals: Ophthalmology 4 (2 urgent) Table 6: Access to
Early intervention: Speech therapy 10 Follow-up Care
Early intervention: Physical therapy 6 (Public Health
Early intervention: Occupational therapy 6 System)

Category # of Children
Routine medical/developmental surveillance Yes
Further tests (medical/other) Yes
Re-visit needed Yes
Referrals: Ophthalmology Yes (approx. 12 month wait)
Early intervention: Speech therapy No
Early intervention: Physical therapy Yes (limited)
Early intervention: Occupational therapy No

Despite the small sample, the diagnoses are in fact a microcosm of those for children who attend
the Child Development Clinic. Definitely, the evaluations are an important starting point for
subsequent studies on similar children in the health system. However, in the private and public
sectors, the number of health professionals trained in the relevant, specialised field of paediatric
medicine is negligible. As a result, the average costs of one or more of these specialised health
services (see Table 5 and 6) are prohibitive and therefore inaccessible to the average family.

5.3 Limitations

Proper research and data collection are critical components in any project, programme or policy
planning process. The limitations of the pilot study are instrumental to the understanding of
planners and indeed for any proposed programme to be established.

33
5.3.1 Research Methodology

The time allocated for the data collection process was too short and limited the capacity of the
planners to respond to any contingencies that emerged. Significantly, the research framework
also failed to utilise the mixed methodology approach. The use of standard qualitative
approaches such as focus groups and the more innovative community-based participatory
research (CBPR)15 which is commonly used to investigate and provide clarification on specific
health attitudes and behaviours have become standard in social determinant work.

The previously mentioned research conducted by the Child Guidance Clinic demonstrates the
efficient and accurate use of sampling to obtain information about a perceived large number of
cases at the national level. In this pilot study, the sample would have been better identified
within the patient group rather than external to the Child Development Clinic. Based on the
annual attendance to the clinic in the last three years, a sample size of at least one hundred (100)
children would have been more realistic.

An experimental design could have been applied over a defined period (at least six (6) months)
using a case and control group. Therefore, the case group would have received immediate access
to the all levels of specialised care recommended in the evaluation. Meanwhile, the control group
would continue to receive the normal protocol within the current system of delivery. The sample
size would have been larger and the cases although randomly selected would have reflected the
spectrum of childhood disabilities, as well as the varying demographic and socio-environmental
backgrounds of the families.

5.3.2 Stakeholder Participation

The project planning process must consider both timely and broad stakeholder collaboration,
allowing each group to understand and define their expectations and roles in the project. Earlier
sensitisation and awareness workshops were focused on private sector agencies that were seen as
15
A collaborative approach to research that equitably involves all partners/stakeholders in the research process and recognizes
the unique strengths that each brings. CBPR begins with a research topic of importance and has the aim of combining
knowledge with action and achieving social change. Source: Community Health Scholars Program. Definition of Community-
Based Participatory Research. http://www.sph.umich.edu/chsp/program/index.shtml

34
prospective funders rather than those stakeholders who are involved in the direct delivery of
services. Consequently, the referral process was stymied by the lack of buy-in from a critical
stakeholder – the nurses (health centre- or hospital-based) who are often the first contact for
families accessing the health care system.

Only one of the two (2) workshops held with health professionals was successful, mainly
because the participants were staff of the Mt. Hope Maternity Hospital’s Neo-natal Intensive
Care Unit (NICU). As direct and specialised providers of care to newborns, they recognised the
need for the early screening and treatment of infants and children. Direct referrals from this
clinic formed the bulk of the sample. The other cases were largely the result of the efforts of the
field officers (senior nurses) who initiated contact with some of their colleagues in the health
centres.

The low number of referrals from health centres cannot be attributed to a lack of understanding
or interest among these health professionals. Unfortunately, there was no strategic collaboration
with professional organisations such as the Nurses Association and/or the Midwives Association
of Trinidad and Tobago who have a significant role in maternal and child health. Priority must
therefore be given to the strategic inclusion of direct support professionals in the public sector
health system who could serve as a vital link for positive outcomes in early intervention services
for children with disabilities.

5.3.3 Learning Outcomes

As previously discussed, the sample of cases was too small and skewed towards infants with
severe developmental disabilities, which invalidates any reliable conclusions. However, as
previously mentioned, the increased likelihood of survival underscores the need to examine the
risk factors for child disability in the pre- and peri-natal periods for prevention interventions.

A Jamaican study attempted to address this issue through an assessment conducted on a sample
of fifty-seven (57) children taken from the International Epidemiological Study of Childhood
Disability (IESCD) within the aforementioned periods (Thorburn et al, 1992). The children met
the study criteria having been diagnosed with serious mental retardation, multiple disability

35
(including mild disabilities), and cerebral palsy. Similar to the IADB pilot study, these children
underwent extensive testing and standardised evaluations by both a medical doctor and a
psychologist inclusive of a thorough history, medical examination, and screening for vision,
hearing, and nutrition.

This study concluded that the most significant risk factors for child disability at these periods
were multiparity, prematurity and neonatal illnesses. While the IADB study was unable to
explore the issue of multiparity, those risks through prematurity and neonatal illnesses were
identified and supported in the data from other clinics. In the Jamaica study, the variables of
maternal education, occupation and antenatal morbidity were not significant. In fact the small
sample of fifty-seven (57) found teenage motherhood was also a significant risk factor. Similar
to the IADB study some respondents experienced problems with recall on birth weights,
gestational age, etc. (Coore, 2004).

The IADB pilot study has established the country’s first guidelines for the broad assessment of
risk factors for childhood disability and preventive interventions. In fact, when conducted under
an extended time frame, the screening and referral process would be fully functional and
successful. Conversely, the present results are illustrative of prior attempts at national data
collection by non- governmental agencies without the active participation and collaboration with
the relevant public sector agencies.

The responsibility for the establishment of a valid and standardised database on child health
including children with disabilities must be led by the Government as stated in its Policy on the
Disabled. Unfortunately, planners in the social sector continue to develop policies and
programmes without a clear understanding of the relevant issues that influence any type of
intervention. Indeed, without a proper baseline, the role and process of monitoring and
evaluation is superficial and in reality are far more than the results of simple client assessment
surveys.

Any future system of screening, evaluation, treatment and data collection on child health must
encompass both the private and public sectors of the health system. Significantly, it must also
include children in early childhood centres, in institutions such as orphanages, the foster care
system and those in shelters and other places of safety. This major data limitation has wider

36
implications on the quality of policy and planning on all issues related to child health and incurs
significant lifelong costs and consequences to the society as a whole.

37
5. CONCLUSIONS

In Trinidad and Tobago, early intervention services for children face a shortage of well-trained
personnel as well as the geographic isolation of a large sector of the population. Further, the low
economic priority given to identification, screening, and treatment interventions in the long term
may serve to perpetuate many of the negative social issues that result and further burden the
health care system and the wider society.

The report discussed the possible lifespan impact of early intervention strategies for children
with developmental disabilities. The pilot study, though based on a small sample was supported
by secondary data and other similar research. The data from the Child Development, Child
Guidance and Neo-natal Clinics all identify a sharp increase in the number of children with
developmental disorders.

Based on international research, there is a possible correlation between the increased survival of
low birth weight infants, children with congenital disorders, spinal cord and head trauma and
other conditions and the consequential increase of paediatric patients with visual, speech,
orthopaedic and hearing impairments, cerebral palsy, epilepsy, muscular dystrophy, heart
diseases, HIV, and specific learning disorders. Despite an expanded view on the impact of
common disorders like learning disabilities on major life activities, there is less national data on
the causes of these and chronic conditions.

There is need for a shift in the perceptions of the public health and social service sectors from a
treatment to a prevention paradigm. Box 5 outlines Cuba’s investment in early childhood
intervention and the collaborative strategy used to limit and/or improve the life course of
children with developmental disabilities. Cuba’s intersectoral approach and its focus on local
level and community engagement have produced successful outcomes in its early childhood
strategies. This approach facilitates proper targeting and support to children and their families.

38
 Box 5

The World Health Report 2008 cites As previously stated, in Trinidad and Tobago, there has
Cuba and its ability to rally limited
resources to implement “health for all been limited progress in the development of inclusive
policies”. In 2006, Cuba’s life
expectancy at birth (78 years) was the
social programming that improves the quality of life for
second highest in the Americas, with children with disabilities and their families. Investing in
only 7.1 per 1000 of infant mortality
(0-5years). Despite significant the health of mothers and young children is an important
economic difficulties (GDP per capita at
$4500), Cuba’s educational indicators component of social and economic development.
for young children are among the best
in Latin America. Further, its success in
ensuring child welfare illustrates its Social conditions are a major influence of health however
commitment to a national public-
health system through intersectoral the issues of poverty, income equalities, and childhood
action. Priority has been given to the
development of human resource deprivation, physical, social and psychological
capacity for health through training of
health professionals in primary care environment cannot be resolved only through public
that gives specific consideration to the
social determinants of health. These
health and the health care system. These conditions are
health professionals work in reflective of social policy more so than health policy and
multidisciplinary teams in
comprehensive primary-care facilities responses must be designed and defined within a ‘health
providing both curative and preventive
services, with accountability for the in all policies”16 perspective.
health of a geographically defined
population. They work in close contact
with their communities, social services In Jamaica, the process of determining the attributes to be
and schools, reviewing the health of all
children twice a year with the teachers. used to measure early childhood and development
With a strong preventive approach and
a national policy that prioritises early involved the establishment of an intersectoral committee
childhood investment, these
collaborations are responsive to the
comprised of members of the health, education, finance,
social determinants of health within
planning, statistical and research sectors. A series of
communities. There are three non-
compulsory preschool education workshops was held with all agencies associated with
programmes, which cover almost 100%
of children less than six years of age. early childhood care and development, the
These programmes involve screening
for developmental disorders which representatives who gave their input based on individual
facilitates early intervention. Children,
who are identified with disabilities and experiences. The resultant attributes included socio-
their families, receive individual
attention through multidisciplinary economic status, family structure, family functioning,
teams that contain both health and
educational specialists. social environment, health and nutrition and the learning
environment. Within each attribute, there were a number
of individual factors identified. Instruments of known
validity and reliability in Jamaica and other populations were used to measure the identified
attributes and factors where possible
16
See Box 5.

39
In Trinidad and Tobago, the Government’s legislative path on behalf of children and children
with disabilities defines its commitment to enforce the rights of children. Significantly, ‘health in
all policies’ has implications for the government’s role in the enforcement of environmental laws
to reduce the possible negative impacts to the health of children. Indeed, the subsequent heavy
financial burden to the country’s social sectors during the life course is supported by the
concomitant need for appropriate environment risk assessment and management.

40
6. RECOMMENDATIONS

An intersectoral approach and integration of early childhood interventions into the relevant
sectors will not be easy and despite being a lengthy process, will also require timely
implementation. Notably, priority must be given to early identification, screening and treatment
of children.

Table 7 below illustrates some of the critical elements which are necessary for the effective
management and support of early interventions for children with developmental disabilities
(Simeonssen, 2003). These elements are not mutually exclusive, but also involve considerable
intersectoral and collaborative activities.

Table 7: Key Elements in Developing and Sustaining Early Childhood Development Programs for
Children with Disabilities in Developing Countries

ELEMENT DESCRIPTION

Integration

System integration A coordinated approach to early child development involving health,

education and social service sectors

Community integration Integration of programmes into structure and life of local community

Sustainability

Financial Clearly defined programme components; building on existing resources;

maintenance of local control

Human capital Provision of information and skills for family members and caregivers;
training of community workers; and key professionals in health and
education

Quality assurance

Evidence-based documentation Accountability to families and funding sources through objective evidence
of valued and reliable outcomes

Quality control assurance Accountability to families through establishment of standards defining

ethical and scientific validity of programs

41
7.1 Integration

Community Integration

In Trinidad and Tobago, child health care for these and other specialised services are hospital-
based and centralised. For families who have children with disabilities, the ability to access the
quality care at Mount Hope is often limited by transportation and other related costs.

The decentralisation of the state’s services is intended to improve service delivery at the local
level and in some cases bring community care initiatives to the most vulnerable. Any
programme that proposes to screen and treat children for/with developmental disorders must also
seek to rationalise its delivery system to meet the needs of families whose budgetary priorities do
not allow them to access the necessary care for their children.

Other NGO-driven health initiatives have found it necessary to subsidise transportation and other
variable costs on behalf of clients that require specialised health services. The proposed
community care model must be lead by civil society agencies, specifically those non-government
organisations which have been more successful in targeting and social support.

Alternatively, several countries in the region17 have taken a home-visiting approach in early
intervention services for disabled children. Using an adapted version of the Portage Guide to
Early Intervention, a culturally-appropriate developmental checklist and a corresponding
structured curriculum the cognitive, language, motor, socialisation and self-help domains are
covered. Paraprofessionals, who are often the mothers of disabled children, are trained to
facilitate activities for infant stimulation. These paraprofessionals are also trained to assess the
infant’s developmental level, to plan a programme of intervention and implement them during
home visits. A supervisor usually supervises the visits (Baker-Henningham, 2004).

17
These countries include Grenada, St. Lucia, St. Vincent and the Grenadines, Dominica, Jamaica and Tobago

42
7.2 Sustainability

Training for Direct Support Professionals

The pilot study highlighted the gaps in knowledge among the surveyed health professionals in
recognising and diagnosing children with visible and invisible disabilities (See Appendix 1).
Earlier sensitisation workshops conducted by Families in Action with teachers and other private
health professionals showed a similar result. Despite the existence of welfare programmes such
as the public assistance and disability grants, intervention is slow because of the weak social
services delivery system which largely results from the low cultural competence 18 of the direct
support staff.

Unfortunately, the system cannot be strengthened through generic customer relations training
programme. An immediate solution could be the expanded role for non-governmental
organisations in the sensitisation and re-orientation training for frontline staff, the latter with
whom many of their clients have had negative interactions.

Training programmes have traditionally prepared professionals to work with children at risk
and/or with disabilities within a specific disciplinary perspective. Alternatively, the response
must be the inclusion of interdisciplinary training that considers the implications of legislation
(the CRC, Children’s Bills, Equal Opportunity Act, Policy on Persons with Disabilities), and
public policy on education and related services. Further interdisciplinary approaches to children
and their families must emphasise systems theory and developmental ecology (Simeonsson,
2003).

The Cuban model of early intervention is defined by extensive human resource development
based on the clearly defined needs of a target population. Our training programmes must
consider the role of integrated systems of care for effective services and service delivery.
Interventions cannot be unilateral (with specific use of a social work, education, or health model)
but must be defined by the continued search for a common agenda across disciplines in early
childhood intervention and special education. This interdisciplinary approach is central to the
18
“Cultural competence is used in relation to the services, supports or other assistance, means services, supports, or
other assistance that is conducted or provided in a manner that is responsive to the beliefs, interpersonal styles,
attitudes, language, and behaviours of individuals who are receiving the services, supports, or other assistance, and
in a manner that has the greatest likelihood of ensuring their maximum participation in the program involved...”
Developmental Disabilities Assistance and Bill of Rights Act of 2000, Sec. 102(7).

43
preparation of professionals committed to make intervention accessible and effective for all
children who need it.

Financial Resources

In many developing countries, early intervention programmes for children with disabilities are
often non-governmental with external funding. Sustainability is built through strong parent
advocacy and support. Yet continual support is not guaranteed since funding agencies would
expect professionalisation and scaling up of early intervention services as well as their
mainstreaming for management by the government.

In Trinidad and Tobago, the Government has long recognised the value of investing in early
childhood initiatives. On the path to becoming socially developed, the impact of investments in
early childhood interventions for children with developmental disabilities would be reductions in
future social costs. Further, the rights-based approach must also influence the quality of access
to financial support services. Enforcement of these and other rights for the disabled would occur
in the implementation of the equal opportunities legislation.

7.3 Quality Assurance

Evidence-based documentation

The Convention on the Rights of Persons with Disabilities and Article 7 of the Conventions on
the Rights of the Child prescribe that persons with disabilities are not adjudged as having special
needs and the target of charity. Alternatively, the conventions promote a rights-based approach
to programming. Consequently, there must be a standardised system of data collection on
children especially for those with development disabilities in the health system. A networked
computer-based information system in the health sector which includes socio-demographic and
specific health data will expedite the creation of an appropriate database.

Given the synergistic link between poverty, health and well-being, as in many other Caribbean
countries, instruments such as the ICF country survey of the population must be conducted so as
to assess the numbers of individuals and types of disabilities. Furthermore, in the short term the

44
Census, Status of Women and Children, and the Survey of Living Conditions must include an
extended component on persons with disabilities and parenting practices. A meta-analysis of the
resulting data could form the basis for specific social programming for interventions.

The electronic and print media have increased their focus on children’s health issues and may
now be perceived by the public as the only official source for credible information. The Ministry
of Health is limited in its response to these ‘health stories’, mainly due to the deficits in official
data such as parental practices in relation to health behaviour, environmental and other child
illness-causing issues. Within the Ministry, good data will provide administrators, policymakers
and health professionals with the information required for evidence-informed health system
policy, appropriate social marketing campaigns and communication.

Within the Ministry of Health, there has been significant and relevant research (emanating from
the Child Guidance Clinic, the Department of Psychiatry and St. Ann’s Hospital) on child
development and mental health, their correlation with the issue of nature versus nurture and the
adult patient. Easier access to these data as well as collaboration with these stakeholders is
necessary for relevant and informed health systems policy and sustainable programming for
children (and adults) with developmental disabilities. Given the impact of early childhood on
the life course, more comprehensive social policy and programming is required at all levels of
the society. These must be more child-centred so as to mitigate any future negative influences.

In conclusion, the data collection and evaluation of interventions are just some of the ways to
reduce the stigma that faces individuals with disabilities and their families. The earlier
discussion on child abuse and community violence highlighted the need for parents and/or
caregivers to be provided with the tools and resources to parent and understand the
developmental prerequisites for children. This process will also require the involvement of
communities in the participatory evaluation and assessment of services as well as community-
based participatory research activities. Significantly, the process of community participation
must not be manipulative or tokenistic, but rather a medium through which introspection and
health attitudes and behaviours towards childhood disabilities are positively transformed.

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