University of Southern California Dissertations and Theses

Research to develop a manual for parents, caregivers, and volunteers to teach children from birth to five years of age with intellectual disability living in rural communities in the Dominican Re...

(USC Thesis Other)

Research to develop a manual for parents, caregivers, and volunteers to teach children from birth to five years of age with intellectual disability living in rural communities in the Dominican Re...

PDF

Download a page range

Download transcript

Copy asset link

Request this asset

Transcript (if available)

Content

Research to Develop a Manual for Parents, Caregivers, and Volunteers to Teach
Children from Birth to Five Years of Age with Intellectual Disability
Living in Rural Communities in the Dominican Republic
Carlos E. Madrid
Sol Price School of Public Policy
Doctor of Policy, Planning, and Development
University of Southern California
May 2017

1

Table of Contents
Chapter 1 Introduction…………………………………………………………………………….2
I. What Is Intellectual Disability?.......................................................................................2
II. The Importance of Early Intervention for Children with Intellectual Disability……..10
Chapter 2 Intellectual Disability in the Dominican Republic…………………………………....22
I. Context………………………………………………………………………………..22
II. Dominican Republic as a Study Site…………………………………………………27
Chapter 3 Methodology and Review of Existing Manuals/Materials…………………………..31
I. Process for Inclusion of Materials……………………………………...…………….32
II. Criteria for Comparison……………………………………………………………...33
III. Current Best Practices………………………………………………………..……....34
Chapter 4 Manual in English and Spanish………………………………………………….......38
References…..……………………………………………………………………….…………78

2

CHAPTER 1
Introduction
Children with intellectual disability reside in every country and nation and there is an indisputable
recognition that parents and caregivers are among the critical resources available to children with
intellectual disability. Increasingly in western nations, parents and caregivers are involved in
intervention at home to reinforce what professionals do. Historically, western nations have been
at the forefront of recognizing the potential of children with intellectual disability and assuring
their full inclusion and participation in community life. Similarly, the increasingly critical and
active role of the parents and caregivers in supporting their child’s development has led to
extensive development of parent training materials. The purpose of this project is to develop a
culturally competent manual for parents, caregivers, and volunteers that provides hope and gives
insight into how to best assist and promote the early development of children (birth to 5 years)
with intellectual disability living in rural communities of the Dominican Republic. The manual
was written for the Dominican Republic’s rural communities and their unique needs, specifically
because most parent/training manuals for children with intellectual disability are generally
translated directly from English to the culture utilizing the manual, resulting in manuals that are
not culturally competent, especially for native populations.

Chapter one begins with a general section on intellectual disability, followed by a section on the
importance of early intervention for children with intellectual disability. The chapter closes with a
summary of the key points.

I. What Is Intellectual Disability?
A. Defining Intellectual Disability
Intellectual disability, previously known as mental retardation in the Diagnostic and Statistical
Manual of Mental Disorders-IV (DSM-IV), is a developmental disability that appears before the
age of eighteen and is defined by deficits in intellectual functioning and adaptive functioning
(Hales, Yudofsky, & Roberts, 2014). Public Law 111-256, also known as Rosa’s Law, replaced
the term mental retardation with intellectual disability and currently research journals use the term
intellectual disability exclusively. Today, intellectual disability is the term in common usage by
medical, educational, and other professions and by the lay public and advocacy groups (American
Psychiatric Association [APA], 2013).

According to the DSM-V, the most recent iteration of the Diagnostic and Statistical Manual of
Mental Disorders, three criteria must be met for a diagnosis of intellectual disability: (1) There
must be deficits in intellectual function in such areas as learning from experience, academic
learning, judgment, abstract thinking, planning, problem solving, and reasoning, resulting in an IQ
below 70; (2) there must be significant limitations and deficits that result in the failure to meet
developmental and sociocultural standards for personal independence and social responsibility in
one or more areas of adaptive behavior and functioning as measured by an adaptive behavior rating
scale, i.e., communication, self-help skills, interpersonal skills, and more; and (3) there must be
evidence that the onset of these limitations in intellectual function and adaptive deficits became
3

apparent during the developmental period and before the age of eighteen. Intellectual disability
must be formally diagnosed by a professional assessment of intelligence and adaptive behavior
(Hales et al., 2014).

B. Understanding the History of Intellectual Disability
Throughout much of human history, society has been unkind to people with intellectual disability.
Until approximately the eighteenth century, those with intellectual disability were believed to be
possessed by the devil or to be sinners. By the nineteenth century, persons with intellectual
disability were thought to have genetic deficits and they were placed under the care of medical
professionals. This type of thinking gave rise to almshouses, workhouses, and institutions for the
disabled. By the 1930s, those with intellectual disability were considered genetically defective.
They were institutionalized, sterilized, and often exterminated (Adams, 2007). By the mid-20
th

century, and after WWII, society and researchers began to question the custodial treatment and
low expectations of those with intellectual disability (Friend, 2014). However, they continued to
be institutionalized and rehabilitated (Adams, 2007).

The Civil Rights Movement of the 1960s in the United States spawned the Disability Rights
Movement of the 1970s. Attitudes, societal barriers, and lack of services were seen as the problem,
not the disabled individual (Adams, 2007). The first federal law to address the education of
children with intellectual disability is known as the Elementary and Secondary Education Act of
1965. In 1972, the landmark decision in the Pennsylvania Association of Retarded Children vs.
the Commonwealth of Pennsylvania established that children with intellectual disability were
entitled to a free, appropriate education. The first civil rights legislation in the United States
specifically intended to protect individuals with disabilities was passed in 1973 and is known as
the Rehabilitation Act of 1973 (Friend, 2014).

In 1975, the Education of the Handicapped Act, which is considered the basis for all subsequent
special education practice, was passed. This law has been amended several times and in 1986 it
was amended to include services for infants and young children. In 1990, this law was reauthorized
and renamed the Individuals with Disabilities Education Act (IDEA). Also in 1990, the Americans
with Disabilities Act (ADA) was passed in the United States. This law is by far is the most
comprehensive legislation protecting the rights of individuals with disabilities, regardless of their
ages, in the United States. The Rehabilitation Act of 1973, IDEA, and ADA work together to
ensure that the citizens of the United States with disabilities have the right to fully access
throughout their lives all the programs, services, and activities available to other citizens (Friend,
2014).

In a similar way, in the last 50 years, the United Nations, the World Health Organization, and the
Pan American Health Organization have been active in supporting human rights, the rights of
children, and the rights of the disabled by passing resolutions and convening conventions. In most
countries, the deinstitutionalization of individuals with intellectual disability was complete by the
year 2000. With the support of these international agencies, the global disabled population can
look forward to a life of greater freedom, access, and independence than at any other time in history
(Adams, 2007).

4

C. Causes of Intellectual Disability

In 75 percent of the children who are diagnosed with intellectual disability the cause of their
intellectual disability is unknown, especially if the child is only mildly impaired. Scientists
categorize the known etiologies of intellectual disability for children with significant impairment
according to the age when their disability occurs, from preconception through the early childhood
years. Known causes of intellectual disability can be classified as prenatal, perinatal, and postnatal.
Prenatal causes of intellectual disability occur before birth, perinatal causes occur in and around
the time of birth, and postnatal causes occur after birth (Smith, 1993).

There are numerous prenatal causes of intellectual disability that are either inherited or non-
inherited genetically, causes due to early alterations in the embryonic development, or other
prenatal acquired causes during pregnancy. Genetically, intellectual disability occurs when
abnormal genes are inherited from the parents or from errors that occur when the genes combine.
Early alteration of the embryonic development results when the fetus does not develop properly
due to specific syndromes or multiple congenital anomalies. Acquired causes of intellectual
disability include problems during pregnancy or the health and behavior of the mother (Smith,
1993).

Inheritable genetic conditions that exist in one or both parents, prior to conception, are one of the
causes of intellectual disability. A parent may pass on a chromosome with an abnormal gene or
he/she may pass on too many chromosomes or too few chromosomes. In other instances, a parent
with a balanced rearrangement of chromosomes may transmit to his child an unbalanced
rearrangement of chromosomes. These genetic transmissions result in patterns of chromosomes
that result in intellectual disability and physical anomalies. Some inherited causes of intellectual
disability are tuberous sclerosis, fragile X syndrome, Hurler syndrome, Tay-Sachs disease and
phenylketonuria (Smith, 1993).

The most common form of inherited genetic intellectual disability is the fragile X syndrome. Both
men and women can carry this disorder, but only women can transmit the disorder to their
offspring. Fragile X syndrome is caused when a mutation occurs in one of the gene segments on
the X chromosome and this mutation is replicated numerous times. This causes the gene to “turn
off,” which blocks the production of a necessary cellular chemical. The more often the mutated
gene is replicated, the more severe the symptomatology in the child will be. Full fragile X
syndrome is seen in approximately 1 in every 1,200 males and 1 in every 2,500 females (Friend,
2014). Both males and females with this disorder have similar abnormal physical appearances,
poor muscle tone, delayed speech and language development, as well as numerous other
difficulties. The males with this disorder usually have severe intellectual disability and the females
have milder impairments. Fortunately, both males and females are generally physically healthy
(Smith, 1993).

There are also genetic causes of intellectual disability that are not inherited. These unpredictable
occurrences of major changes in the germ cell are caused during the early stages of cell division
in the germ cell itself or in the fertilized egg. An error in separation, recombination, or distribution
of chromosomes sometimes occurs. These types of errors in early cell division are very common
5

and most of them are incompatible with the progression of the pregnancy and result in a
spontaneous abortion. The types of chromosomal abnormalities that are compatible with life and
result in intellectual disability are Down syndrome, Trisomy 13, Trisomy18, and cri du chat
syndrome (Smith, 1993).

Down syndrome is the most common non-inherited genetic condition causing intellectual
disability (Smith, 1993). One in 691 children is born with Down syndrome, making it the most
well-known intellectual disability. This syndrome occurs in both sexes and across racial and ethnic
boundaries (Friend, 2014). Maternal age seems to contribute to the incidence of this syndrome, as
the age of the mother increases; there is an increase in the incidence of Down syndrome babies
born to older mothers (Smith, 1993). Down syndrome is easily discerned; each individual has 46
chromosomes, 23 contributed by each parent (Friend, 2014). In persons with Down syndrome there
is an extra chromosome in the twenty-first chromosome pair. This extra chromosome contributes
extra genetic material which causes the child to have poor muscle tone and other easily identifiable
physical characteristics. Frequently, these individuals have vision impairments or hearing loss.
Many have heart defects that require medication or surgery. They may also have intestinal
malformations, hypothyroidism, and instability of the upper two vertebrae. Individuals with Down
syndrome usually have mild to moderate intellectual disability, although individuals’ differing
intellectual disability may range from near normal intelligence to severe intellectual disability
(Smith, 1993).

There are numerous acquired prenatal causes of intellectual disability in individuals. Teratogens,
or environmental influences, can cause intellectual disability and other physical anomalies in the
developing fetus. A teratogen is any chemical or physical substance that can cause physical or
functional problems in the developing fetus. Alcohol, illicit drugs, prescribed medications, toxins
such as lead and mercury, maternal infections, and maternal metabolic conditions such as diabetes
are all teratogens. Very little is known about the effect of teratogens on the developing fetus, but
they usually cause cell death, alter tissue growth, and interfere with the development of the
growing fetus. It is the health and behavior of the mother that are key to avoiding complications
from environmental influences during pregnancy (Smith, 1993).

Fetal alcohol spectrum disorders (FASD) are considered the leading causes of intellectual
disability in children and are highly preventable (Friend, 2014). According to the Center for
Disease Control and Prevention (2016a) the prevalence of FASD in the United States among
school age children is 1 in 20. Fetal alcohol spectrum disorders are caused solely by the alcohol
consumption of an expectant mother (Friend, 2014) and it has been determined that there is no safe
level of alcohol consumption during pregnancy (Smith, 1993). Fetal alcohol syndrome (FAS) is
the most severe form of this disorder, with a prevalence rate of .5 to 2 cases born per 1,000 births
(Friend, 2014). Children born with FAS have a below-average growth rate before and after birth.
They are usually small and never really catch up to their peers after birth. They have distinctive
facial features, widely spaced eyes, a short-upturned nose, flat philtrum and a thin upper lip.
Children born with FAS usually have intellectual disability in the mild to moderate range, but for
some children with FAS the range can be from normal intelligence to severe intellectual disability
(Smith, 1993).

6

Maternal infections during pregnancy result in the unborn child being exposed to their mother’s
infection either before or during birth, and because of this exposure, develop intellectual disability.
It has been found that maternal infections can cause a wide spectrum of problems, ranging from
mild to severe. Researchers have identified many maternal infections that cause intellectual
disability, such as cytomegalovirus, rubella, measles, chicken pox, syphilis, toxoplasmosis,
hepatitis B, coxsackie virus group, and acquired immune deficiency syndrome (Smith, 1993). In
April, 2016 Tom Frieden, director of the Centers for Disease Control and Prevention, announced
that the Zika virus was added to this group of dangerous maternal infections. The CDC, after a
careful review of existing evidence, concluded that the Zika virus increases the risk for an infected
mother to give birth to a child with microcephaly or other severe fetal brain defects (CDC, 2016b).

Many other maternal conditions have the potential to be harmful to the developing infant and
increase the risk of intellectual disability. Maternal conditions such as diabetes, high blood
pressure, and heart and thyroid diseases increase the likelihood of premature birth, intrauterine
growth retardation, and developmental problems. Incompetent cervix and uterine fibroids
contribute to premature births. Complications of pregnancy such as toxemia and RH
incompatibility also increase the risk that a baby will be born with intellectual disability (Smith,
1993).

Sometimes a baby’s brain develops normally but is injured at the time of birth. Perinatal causes of
intellectual disability include any problems that occur during or immediately after birth. Most of
the complications resulting in intellectual disability at the time of birth are related to oxygen
deprivation. The loss or decrease of oxygen causes brain damage through a build-up of carbon
dioxide in the blood and tissues of the baby, low blood sugar, or other metabolic disturbances.
Placenta previa and abruptio placenta both have the potential to cut off oxygen during delivery
(Smith, 1993). Birth injury that deprives the baby of oxygen such as a forceps delivery or
procedures followed during birth can also be the cause of intellectual disability. Premature babies
that weigh less than 3.3 pounds have a 10% to 20% risk of having intellectual disability due to
complications shortly after their birth (Friend, 2014).

Postnatal causes of intellectual disability are many. Illness or accident can sometimes be the cause
of intellectual disability in children before the age of eighteen. Exposure to certain types of
diseases or toxins can be tremendously harmful. Diseases like whooping cough, measles,
meningitis, or encephalitis can cause intellectual disability if medical care is delayed or inadequate.
Exposure to poisons such as lead may also affect mental ability. Tumors and head injuries are
potential causes of postnatal cases of intellectual disability. Malnutrition, usually caused by
poverty, is another common cause of reduced intelligence (Smith, 1993).

Poverty is a contributor to intellectual disability. Research suggests that individuals living at or
below the poverty line are at an increased risk for passing on or developing intellectual disability.
This increased risk is traced to limited options with regards to general safety, living standards,
education and healthcare. People living in poverty are harmed by their environment and do not
have the opportunities that the more fortunate do. The social stigma of poverty causes lasting
mental damage. Poverty prevents its victims from escaping the hazards that encourage intellectual
disability (Emerson, 2007).

7

Agencies such as UNCHS (United Nations Center for Human Settlements) and the World Bank
have developed a definition and a standard measurement for poverty with the purpose of setting
indicators and references for programs that they have developed in many countries. Their
definition of poverty, as well as its indicator, the poverty line, is used as a starting point in
elaborating other issues of poverty and its measurement. Poverty is a condition in which persons
or communities lack sufficient assets to fulfil their basic needs and they remain deprived and
vulnerable. People are considered deprived if they lack the goods and services that are available
to others in their society. Poverty implies deprivation towards meeting human needs caused by a
fundamental lack of income or assets to obtain food, clothing, adequate housing, and health care
(Sarlo, 1992). Thus, the poverty line is the level of resources needed for people to meet their
needs.

The causes of intellectual disability are numerous and overwhelming. The preceding is only a
brief discussion of the many causes of intellectual disability. It must be remembered that advances
in medical technology provide additional information every year. These advances may one day
help to prevent some types of intellectual disability and help to minimize the adverse effects of
those that cannot be prevented (Friend, 2014).

D. Signs and Symptoms of Intellectual Disability
The signs and symptoms of intellectual disability are all behavioral. Many individuals with
intellectual disability appear physiologically normal, especially if their disability is caused by
environmental factors such as malnutrition or lead poisoning. The so-called “typical appearance”
ascribed to children with intellectual disability is only present in a minority of cases (Friend, 2014).

Parents are usually the first to notice that their child is not within normal range, that somehow, he
or she is different or developing more slowly than other children. Children with intellectual
disability may learn to sit up, to crawl, or to walk later than other children. They learn more slowly
than a typical child. They may take longer to develop social skills and take care of their personal
needs, such as dressing or eating. A child with intellectual disability will have delays in oral
language development, deficits in memory skills, difficulty learning social rules and difficulty with
problem-solving skills. He or she may exhibit a lack of social inhibitors. Learning will take them
longer, require more repetition, and skills may need to be adapted to their learning level (Friend,
2014). Nevertheless, most children can learn, develop, and become participating members of the
community to the best of their ability.

E. Diagnosis of Intellectual Disability

The changes made in the Diagnostic and Statistical Manual of Mental Disorders-V (DSM-V)
explain the severity of intellectual disability so that they are consistent with the emphasis now put
on the individual’s interaction with his environment. The criteria used to diagnose intellectual
disability in the DSM-V emphasizes the interaction of the individual with his environment, rather
than solely relying on his I. Q. score (Hales, 2014). According to the DSM-V, in order to make
the diagnosis of intellectual disability, the onset of intellectual disability must occur before the age
of eighteen, during the developmental period. There must be evidence of both intellectual deficits
and adaptive functioning deficits in conceptual, social, and practical domains (APA, 2013).
8

Intellectual disability is not a monolithic construct. I.Q. does not give the complete picture. The
criteria used to establish the severity of intellectual disability, according to the DSM-V, is the
individual’s ability to cope with his environment and establish personal independence and social
responsibility (Hales, 2014). Cognitive impairment, only one aspect of the diagnosis, is divided
into four categories by IQ scores: (a) profound intellectual disability below 20, (b) severe
intellectual disability 20-34, (c) moderate intellectual disability 35-49, (d) mild intellectual
disability 50-69 (Tasse, 2013). Clinical assessment and individualized, standardized intelligence
testing must verify deficits in intellectual function, such as reasoning, problem solving, planning,
abstract thinking, judgment, academic learning, and learning from experience. In order to interpret
these test results and assess intellectual performance, clinical training and judgment are required
(APA, 2013).

The diagnosis of intellectual disability is not based entirely on IQ scores, it must also take into
consideration the child’s adaptive functioning. It encompasses intellectual scores, adaptive
functioning scores and adaptive behavior rating based on descriptions of known abilities (Hales,
2014). To be diagnosed with intellectual disability the individual’s adaptive deficits must limit
functioning in one or more activities of daily life, such as communication, social participation, or
independent living, and across multiple environments such as home, school, work, and community.
Scores that indicate a lack of developmental and sociocultural standards for personal independence
and social responsibility contribute to the diagnosis of intellectual disability (APA, 2013).

Adaptive behavior, or adaptive functioning, refers to the skills needed to live independently or at
the minimally acceptable level for age. To assess adaptive behavior, professionals compare the
functional abilities of a child to those of other children of similar age. To measure adaptive
behavior, professionals use structured interviews with which they systematically elicit information
about the child’s functioning in the community from people who know him well. There are many
adaptive behavior scales, and an accurate assessment of the quality of someone’s adaptive behavior
requires clinical judgment as well. The skills that are important to adaptive behavior are: daily
living skills, such as getting dressed, using the bathroom, and feeding oneself, social skills with
peers, family members, spouses, adults, and others; and communication skills such as
understanding what is said and being able to respond appropriately (Hales, 2014).

The overall prevalence of intellectual disability in the general population is approximately 1% and
this prevalence rate varies by age. Prevalence for severe intellectual disability is approximately 6
per 1,000. Individuals with intellectual disability are diagnosed at varying ages depending on their
etiology and severity of brain dysfunction. Children with delayed motor, language, and social
milestones may be identified within the first two years of life due to their severe intellectual
disability, while those with mild intellectual disability may not be diagnosed until school age when
their difficulty with academic learning becomes apparent (APA, 2013).

Children with profound intellectual disability will need intensive support and supervision their
entire life; fortunately, they make up the smallest percentage of individuals with intellectual
disability. They have great difficulty making developmental progress in most areas. Many have
physical limitations and may need complete custodial or nursing care. With intensive training,
they often can learn some self-help and communication skills, depending on the hearing, vision,
9

movement, or other problems that may accompany their intellectual disability. In adulthood, they
continue to require intensive supervision and care (Hales, 2014).

Children with severe intellectual disability are usually diagnosed at an early age due to significant
difficulty with movement and language skills. Their eventual progress depends heavily on the
physical difficulties they experience. With help, especially with more recently developed
technologies and techniques, they can learn some speech skills and communicate their wants and
needs. While academic skills such as reading and writing are difficult, they often can learn
community survival skills such as recognizing street signs. In school, instruction often focuses on
self-help skills such as hygiene, as well as vocational training. As adults, they frequently can work
with supervision in community jobs or special shops. Many can also perform necessary daily
activities themselves, usually with supervision (Hales, 2014).

Moderate intellectual disability is nearly always apparent within the first few years of life. Speech
delays are particularly common signs of moderate intellectual disability as well as difficulty in
learning movement skills. Children with moderate intellectual disability are more likely than
children with mild intellectual disability to have cerebral palsy or other physical disabilities. In
addition, they usually have delays in social skills. Children with moderate intellectual disability
need considerable support in school, at home, and in the community in order to participate fully.
While their academic potential is limited, they can learn simple health and safety skills and can
participate in simple activities. With special education and speech and language therapy, most
children with this level of intellectual disability make good progress in communication, social, and
self-care skills in the preschool years. They eventually can master subjects from about the second
to fourth-grade level, and can make excellent progress in learning social, self-help, and
employment skills. As adults, they can usually perform meaningful work in the community or in
a sheltered “workshop” setting, with or without support or special help. Most can live successfully
in group homes or other living arrangements in the community where they have the advantages of
both independent living and supervision (Hales, 2014).

In early childhood, mild intellectual disability may not be obvious and may not be identified until
the child begins school. Even when poor academic performance is recognized, it may take expert
assessment to distinguish mild intellectual disability from learning disabilities or emotional
behavior disorders. Children with mild intellectual disability often achieve early social skills and
movement skills such as sitting and walking at the same time as their peers. They may not appear
to be significantly different from other children until they are expected to learn more advanced
cognitive skills in school. With appropriate educational help, eventually they can master academic
skills up to about a sixth-grade level, although it takes them longer than average to learn these
skills. They can learn self-care and practical skills, such as cooking or using the local mass transit
system. Most children with mild intellectual disability are capable of eventually developing
sufficient social, vocational, and self-help skills to be able to live and work in the community,
either independently or semi-independently, with respect to their chronological age, sociocultural
background, and community setting (Hales, 2014).

Some children under the age of five who have difficulties, but are not diagnosed with intellectual
disability, may have deficits that meet the criteria for global developmental delay. In order to be
diagnosed with global developmental delay a child must be under the age of five at the time when
10

the clinical severity level cannot be reliably assessed through standardized testing during early
childhood. When a child fails to meet expected developmental milestones in several areas of
intellectual functioning, a diagnosis of global developmental delay is appropriate, but they are
required to be reassessed after a given period (APA, 2013).

The domains that establish an individual’s degree of intellectual disability are conceptual, social,
and practical. The clinician decides the severity of each of these three domains so that a composite
picture of an individual can be made. Everyone demonstrates patterns of strengths and weaknesses
across the domains of functioning. This information, coupled with IQ scores, determines the
degree of severity of the intellectual disability (Hales, 2014).

F. Management of Intellectual Disability

There are specific programs that children with intellectual disability can take part in, in which they
learn basic life skills. These “skills” may take a much longer amount of time for them to
accomplish than for others, but the goal is independence, independence in accomplishing such
skills as tooth brushing or feeding themselves. Children with intellectual disability can learn
throughout their lives and can obtain many new skills, even late in life, with the help of their
parents, families, caregivers, clinicians, and the people who coordinate the efforts of these (Zeldin,
2016).

Although there is no specific medication for intellectual disability, many children with intellectual
disability have further medical complications and may take several medications. For example, the
use of psychotropic medications such as benzodiazepines in children with intellectual disability
requires monitoring and vigilance as side effects occur commonly and are often misdiagnosed as
behavioral and psychiatric problems (Zeldin, 2016).

The causes and symptoms of intellectual disability have a long, well-documented history in the
literature. The causes of intellectual disability are prenatal, perinatal, and postnatal. The signs and
symptoms of intellectual disability are all behavioral. Once a child has been diagnosed with
intellectual disability, there is still great hope for him, as all children have the capacity to learn.
These special children can learn, and with proper assistance and instruction, can have productive
and meaningful lives within their community.

II. The Importance of Early Intervention for Children with Intellectual Disability

Early intervention plays a prominent role in the treatment of intellectual disability. The number
of young children worldwide affected by intellectual disability is monumental; however,
expectations for high accomplishment are reasonable during their first five years of life with proper
support and training. Early support and training will enhance the development of young children
with intellectual disability by altering their developmental trajectories and preventing secondary
complications from occurring (Guralnick, 2005). Early intervention is defined as special
instruction or therapy designed to help infants, toddlers, and young children improve their
developmental skills and optimize their abilities in order to set a foundation for further learning,
growth, and development (Smith, 1993).

11

Shonkoff and Meisels (2000) promote a more specific and detailed definition:
Early childhood intervention consists of multidisciplinary services provided for children
from birth. . . to promote child health and well-being, enhance emerging competencies,
minimize developmental delays, remediate existing or emerging disabilities, prevent
functional deterioration, and promote adaptive parenting and overall family functioning.
These goals are accomplished by providing individualized developmental, educational, and
therapeutic services for children in conjunction with mutually planned support for their
families (pp. xvii-xviii).

The components of early intervention for a child with intellectual disability are: physical therapy,
occupational therapy, speech/language therapy, life skills training (adaptive behavior), and play
therapy (social and emotional development) and cognitive development (Smith, 1993).

A. Why Early Intervention?

Psychologists, educators, occupational and physical therapists, speech and language pathologists,
and medical researchers understand that critical learning takes place during infancy and in the
toddler and preschool years (Lerner, Lowenthal, & Egan, 1998). They know that early intervention
will enhance the minds of young children exhibiting intellectual delays by altering their
developmental trajectories. Thus, the early years of a child’s life are the most opportune time to
affect many neurobiological and behavioral mechanisms that will generate long-term benefits
(Guralnick, 2005).

The early learning years are critical for all children, but especially so for children with intellectual
disability. Studies have shown that to maximize intellectual growth, efforts must begin within the
first three years of life. The number of brain cells a child keeps and the connections between them
are influenced by the child’s environment. Learning stimulation in the child’s environment causes
the brain to develop trillions of interconnections with which it thinks. Research in early brain
development has shown that: (1) brain development before the age of one is rapid and extensive,
(2) brain development is vulnerable to environmental influences, (3) the influence of a child’s
environment on brain development is long lasting, (4) the environment affects the number of brain
cells, the connections among them, and the way the connections are wired, and (5) early stress has
a negative impact on brain function. An early nurturing and stimulating environment can help a
child be more intelligent—for his entire life (Lerner et al., 1998).

B. Goals of Early Intervention
Early intervention makes a significant difference in the growth and development of all young
children with intellectual disability. This is the underlying premise for establishing programs for
children with intellectual disability. Many of the problems encountered by them can be managed
for them to live better lives and other problems may be overcome or alleviated entirely. Children
with intellectual disability can have their social and cognitive development accelerated through
early intervention programs. The first challenge in working with children with intellectual
disability is to identify them and then immediately provide appropriate early intervention.
Potential learning failure can sometimes be prevented when children are identified with intellectual
disability before they encounter difficulties in school (Lerner et al., 1998).
12

Today, in the United States, there is an energetic movement for collaboration, service coordination,
and inclusive environments in which children with intellectual disability are integrated with their
peers. Due to the tremendous significance of the learning that occurs during the years from birth
to age five children should be ready for academic learning when they start school. In order for this
to be a reality, there must be a rapid rate of learning that occurs during the first five years of life
(Lerner et al., 1998). According to C. W. Brown (1992), in order for all children in the United
States to be ready to learn when first starting school, certain objectives must be met: (1) all children
with intellectual disability must have access to quality and developmentally appropriate preschool
programs, (2) all parents are their child’s first teacher and they must work with them daily in
helping them with their challenges, (3) parents will have the support and help they need, and (4)
children will receive the nutrition and health care they need in order to be successful.

C. Models for Early Intervention Programs
The basic model for early intervention in the United States is to have an early intervention
specialist work collaboratively with professionals, the family, and the child to provide information
and model strategies that will minimize the effects of the child’s risk status or the delay in his or
her development. The early intervention specialist designs a program specific to the needs of the
child. The program must be interdisciplinary, since the best results are obtained through the
cooperation of a variety of specialists, including physical therapists, occupational therapists,
nutritionists, social workers, physicians and nurses, speech therapists and audiologists, as well as
others. In this way, the child’s program is cross-disciplinary and collaborative. The individualized
program for the infant or young child should be provided in natural environments or those places
that most closely resemble the places where the infant or child would naturally be (Hunt &
Marshall, 2005).

There are three ways in which intervention services can be delivered to an infant or a child in need.
The early intervention specialist provides the needed services to the family in their own home, in
a center-based program, or in another program for young children within their community.
Services for an infant or a fragile child would be provided in the home. As the child grows older
or stronger, he or she is more likely to receive services in a program within the community (Hunt
& Marshall, 2005).

An amendment to the Individuals with Disabilities Education Act (IDEA) in 1997 specified that
whenever possible, the child should receive services in natural environments. Due to this mandate,
services can be provided in play groups, day care centers, Mommy and Me classes, libraries, parks
and other places in the community where young children and their caregivers normally are found.
This emphasis on natural environments comes from the principle of normalization. Young
children in early intervention should be doing what their peers are doing, and their services should
be provided in these settings (Hunt & Marshall, 2005).

D. The Role of the Family in Early Intervention
The focus of early intervention has shifted from the child to the entire family system. There has
been a growing appreciation of the importance of viewing the child within the context of the family
13

and this is reflected in current law. Today, the law mandates that each family receive an
Individualized Family Service Plan (IFSP). It is a written record of the personal and social services
needed to promote and support each family member for the first three years of their child’s life.
Each IFSP record must contain: (1) a statement of the family’s strengths and needs as they relate
to the child; (2) a description of the major outcomes to be achieved by the child and the family;
(3) a description of the family’s resources, priorities, and concerns; and (4) a list of the services
needed to meet the unique requirements of each child and his family. The needed services might
include family training, counseling, respite care, and home visits, as well as physical, occupational,
and speech therapy, etc. (Sandall, 1997).

The focus of early intervention is on facilitating and coordinating information related to the child’s
condition, assistance in learning to identify the child’s unique cues, guidance in handling the child
in a therapeutic manner, and referrals to other services. This will result in the family having a more
satisfying and rewarding relationship with their child and fuller development for the child (Chen,
1999).

E. Developmental Areas in Early Intervention
Experts agree that early intervention services and supports are essential components to the early
treatment of intellectual disability (Healthy Children, n. d.). There is no cure for intellectual
disability and therefore services and supports play an important role in the treatment of intellectual
disability. With the proper services and supports, a child with intellectual disability can thrive and
reach his optimum potential through participating in his community (The Arc, 2016). Early
intervention services and supports provided to a child have also been found to help the overall
family function (Healthy Children, n. d.). Therapeutic services and supports that are evidence-
based and beneficial in improving a child’s adaptive behavior skills and functioning in his
community are occupational therapy, physical therapy, and speech therapy (Reynolds, Zupanick,
& Dombeck, 2013).

The goal in occupational therapy for the young child is to assist the child in meaningful and
purposeful activities (Reynolds et al., 2013). A child's “occupation” is to thrive and occupational
therapists work with children with intellectual disability and their families to facilitate participation
and independence (American Occupational Therapy Association [AOTA], 2016a). Early
intervention occupational therapists are concerned with helping children prepare for and perform
important learning and developmental activities. Their early intervention mission is to help infants,
toddlers, and preschoolers with their everyday routines. These everyday routines include play,
rest and sleep, activities of daily living, education, and social participation. A successful
occupational therapist designs interventions that promote healthy development, establish needed
skills, and modify environments to prevent further disability; all of which support participation in
daily activities. Specific services that are addressed by an occupational therapist and that may be
needed by an individual child are feeding skills, sensory integration, motor development,
environmental exploration, play skills, adaptive behavior, and help with interactions between
themselves and others (AOTA, n. d.).

Occupational therapy applies the most up-to-date research to service delivery since it is a science-
driven profession. Evidence supports the effectiveness of occupational therapy. According to
14

systematic reviews of the American Occupational Therapy Association’s Evidence-Based Practice
Occupational Therapy Practice Guidelines, the following occupational therapy interventions
improve the outcomes for a child with intellectual disability (American Occupational Therapy
[AOTA], 2016a).

F. Practitioner Interventions

1. Oral stimulation programs, sensory-motor-oral interventions (AOTA, 2016a).

Oral stimulation programs have proven to contribute to the progression of independent oral feeding
as well as improving the oral feeding performance (Tian-chan, Xiao-jing, & Yun, 2014). The oral-
motor development of a child follows a progression on the suckle reflex to acquire the more
complex oral-motor milestones of suck, munch, and chew. The emergence of each oral-motor
milestone is dependent upon the successful acquisition of the previous milestone (Manno, Eicher,
& Kerwin, 2005). Early oral-motor interventions are the stimulation of the lips, jaw tongue, soft
palate, pharynx, larynx, and respiratory muscles. These programs are simple to implement and are
beneficial to preterm infants and those infants with developmental delays (Tian-chan et al., 2014).

Feeding and swallowing are complex activities that involve more than the mouth, throat, and
stomach. The feeding process involves the internal activities of breathing, digestion, elimination,
and structural alignment; therefore, control and sensory input are important from head to toe. The
sensory motor systems provide the structural foundation and the sensory information that enable a
child to practice and master oral-motor skills. The structures of the body need to be aligned to
allow the most efficient muscular interaction. The head, shoulder, and trunk must be properly
aligned. Studies have shown that proper biomechanical alignment is associated with improved
swallowing, feeding, and speech functioning (Manno et al., 2005).

The motor and sensory systems work together. Sensory information from the body (such as
arousal, hunger, satiety, pain, fatigue, "lump in the throat", or the need to stool) used in
combination with the motor system allows the child to generate an appropriate response to the
desired task of feeding. The motor system and the sensory system must work together so that the
child may have a positive feedback in his mastery of feeding and swallowing skills. Recent studies
have shown the efficacy of oral-motor stimulation and sensorimotor interventions in the treatment
plan for children with intellectual disability (Manno et al., 2005).

2. Early intervention program for preterm infants to improve cognitive outcomes (AOTA,
2016a).

It has been found that by the time a premature infant is at or near his original due date, he has
significant developmental differences compared to a full-term infant. Researchers have discovered
that premature babies, in comparison with full-term babies, have major differences in muscle tone,
reflexes, stress levels and the ability to be soothed and handled by caregivers and the ability to
visually track objects and people in the neonatal intensive care unit. Premature babies usually
have low muscle tone early in their development. Full-term babies tuck in their legs and arms
close to their bodies for several weeks after birth. This flexed position that full-term babies
maintain after birth is due to their cramped pre-birth environment. Premature babies miss this
15

"cramped" environment and their brains have not matured to the point in which they can signal
their muscles to become flexed. Premature infants remain in an extended position as opposed to a
flexed position; this can interfere with their ability to calm themselves and coordinate movements.
Because of their low muscle tone, it is an extra challenge for these babies to achieve normal
developmental motor skills, such as rolling over, sitting up, and crawling in the first year of life.
Premature infants need more physical and occupational therapy (Washington University in St.
Lewis, 2012).

Various studies have shown that early intervention does improve cognitive and motor outcomes
for preterm infants. The Mother-Infant Transaction Program (Rauh, Nurcombe, Achenbach, &
Howell, 1990), a modified version of the Mother-Infant Transaction Program (Nordhov et al.,
2010), and the Infant Health and Development Program (Ramey & Ramey, 1998) consistently
indicated the positive effects of early intervention. The Mother-Infant Transaction Program is an
intervention with the mother that has a significant effect on her maternal adjustment and her
perception of her infant. This program translated into a significant cognitive effect for the child at
three years of age and an increase in cognition at four years of age (Rauh, et al., 1990). A
randomized control trial of a modified version of the Mother-Infant Transaction Program
demonstrated an improved cognitive outcome at a corrected age of five years for children with a
birth weight greater than 2000 grams (Nordhov et al., 2010).

The Infant Health and Development Program (IHDP) was developed to improve the cognitive,
behavioral, and health status of premature and low birth weight babies. The families of premature
infants between birth and three years of age received: 1) pediatric follow-up, 2) home visits, 3)
parent support groups, and 4) a systematic educational program provided in child developmental
centers. The IHDP curriculum is both home and center based whose purpose is to prevent later
developmental problems. At the completion of the program, at three years of age, it was
demonstrated that the program positively impacted the cognitive and motor skills in the
participating children with an increase in their IQ scores and a decrease in their behavior problems
(Ramey& Ramey, 1998).

G. Family Interventions

1. Benefits of skin-to-skin contact (AOTA, 2016a).

Over forty years of research has proven that in the early months of life, skin-to-skin contact creates
eight specific benefits for infants. By simply positioning an infant on his mother's bare chest for
an uninterrupted sixty minutes daily creates a flood of hormones that deliver many advantages to
the infant. Skin-to-skin contact is multi-sensory as it increases the development of essential neural
pathways which in turn accelerate the brain's maturation. The organizational patterns in the brain
are enhanced as the infant spends more time in quiet sleep on his mother's breast. Quiet sleep is
defined as a natural deep sleep for sixty minutes or more. This sleep is important as research points
to it being one of the most beneficial activities for accelerating brain patterning and maturation
(NuRoo, n. d.).

The direct contact of an infant's skin with his mother's calms and soothes him. The infant's cortisol
levels are measurably lowered and pain is reduced. Infants who receive skin-to-skin contact cry
16

less and appear less agitated. Skin-to-skin care helps to maintain the infant's body temperature.
The mother's breasts automatically adjust to cool her baby down or to warm him up. The infant's
immune system is stimulated when he is placed skin-to-skin, as the mother's mature immune
system passes antibodies through her skin and breast milk to the baby. Being on the mother's skin
increases the infant's skin hydration, thereby providing a protective barrier to bacteria. Skin-to-
skin care is good for digestion and weight gain. Sixty minutes of skin-to-skin care per day
increases the feeding frequency of the infant and the likelihood that the infant will breastfeed. It
reduces cortisol and somatostatin in babies, which allows for better absorption and digestion of
nutrients. Through skin-to-skin contact, the baby's body learns to self-regulate a regular and stable
heart rate and breathing rate. Through skin-to-skin contact, or kangaroo care as it has become
known, remarkable benefits for infants are created which otherwise would be lost or minimized
(NuRoo, n. d.).

2. Infant massage to improve sleep and relaxation, reduce crying, and reduce hormones
affecting stress (AOTA, 2016a).

Rest and sleep are important for well-being and maintaining homeostasis and participation in
activities of daily living; therefore, it is addressed by occupational therapy (American
Occupational Therapy Association, 2016b). According to the Mayo Clinic's research, infant
massage can have various health benefits such as encouraging interaction between caregiver and
infant, helping baby to sleep and relax, and affecting infant hormones that reduce stress and crying.
It has been found that sleep problems in children with intellectual disability are common and often
continue for many years with prevalence rates of 25.5% to 36.2 % (Richdale, 2004).

Infant massage is interaction that can form the foundation of relationship building. Massage is a
technique that combines tactile, kinesthetic stimulation in a sequential, purposeful manner. It is a
technique that allows the infant and his caregiver to interact with the resulting benefits of improved
sleep and relaxation for the infant (Schneider, n. d.). Infants who receive daily massage prior to
bedtime are found to have fewer sleep delay behaviors and a shorter latency to sleep onset (Field
& Hernandez-Reif, 2001). Infants who experience massage therapy have lower levels of cortisol,
norepinephrine, and epinephrine, which suggests lower stress and greater relaxation (Field et al.,
1996). Better sleep habits and lower stress hormones translate into a less fussy and tearful infant
and better relationship building between caregiver and infant (Field, 1994).

3. A caregiver-delivered home program for infants to improve motor performance (AOTA,
2016a).

Research has shown that specific or general developmental programs have a positive effect on the
motor development of infants. More specifically, motor developmental programs starting before
the ninth month after term provide greater benefits than those programs starting later. The
incorporation of the parents into motor developmental interventions bodes well for the success of
the program as parents can play an important role in performing the necessary interventions.
Parents can learn how to promote infant motor development, which can then produce a positive
effect on the infant's eventual motor development (Blauw-Hospers, Cornill, & Hadders-Algra,
2005).

17

There are many parental factors that influence an infant's motor skills development. Parents
engage in caregiving behaviors, which are based upon their values, their expectations for their
infant, and their understanding of their child's disability. Many parents/caregivers encourage their
infant to learn and practice specific movements or postures. They may emphasize that their infant
attains certain milestones over others, or they attempt to optimize their infant’s comfort.
Parents/caregivers engage in certain behaviors to provide safety and protection for their child,
build early autonomy, promote desired socialization based upon their culture or increase their ease
of caring for their disabled child as they work to improve their child's motor performance (Cintas,
1995).

4. Play-based activities, rehearsal of social behaviors, modeling, and prompting to improve
social behaviors (AOTA, 2016a).

For infants and toddlers with special needs, "play" is a major component of early intervention.
Children's cognitive, social-emotional, and self-regulatory development is influenced by their
daily routines and activities in which play is an integral ingredient. Infants and toddlers learn about
objects and develop interactive skills through play. The development of language and social skills
is closely associated with play. There is evidence that play may be involved in many other kinds
of learning also. Early brain development is related to the changes in the kinds of play in which
children engage in and different types of play can have an impact on the development of the brain,
especially in the temporal and frontal areas of the brain (Nwokah, Hsu, & Gulker, 2013).

How a child learns to play and how play enhances his learning is affected by developmental delays,
disability, and other mental or physical handicaps. For children with intellectual disability, the
quality of the play environment, the availability of play materials or toys, and the social support
for play are very important. Even though children with intellectual disability are challenged in
learning how to play, they still do play. They especially benefit from play if they have something
to play with such as a toy or a household item (Nwokah et al., 2013).

Within the early intervention discipline of occupational therapy, play is a central focus for children
with intellectual disability or special needs. Play helps the child with intellectual disability learn,
helps in assessing the child's skills, and is a means of achieving other goals. Sometimes acquiring
play skills is the goal, so that play may be used in achieving other goals. For example, playing
with blocks has been shown to improve children's motor skills, helps them to overcome mild
sensory difficulties and increases their social interaction (Nwokah et al., 2013). Play has shown
to be effective in being the environment for rehearsing social behaviors, the modeling of
appropriate behavior by parent or caregiver, and prompting children to improve their social
behaviors (AOTA, 2016a).

5. Family centered help that supports the family to improve satisfaction, parenting
behavior, personal and family wellbeing, social support, and child behavior (AOTA, 2016a).

The entire family—its identity, structure, and functioning—is affected by the birth of a child with
special needs. The family, upon the birth of a disabled infant, finds itself lost and unprepared to
deal with or manage "this new way of being a family." Couples may break apart due to their
changing roles when a child with a disability does not meet their expectations. Each member of
18

the family has their life changed because of the emotional demands and new requirements
stemming from the disabled child's condition. This situation generates conflict and emotional
instability, changing the couple's relationship and causing estrangement among the family
members (Barbosa, Balieiro, & Pettengill, 2012).

The parents of a newly born infant with intellectual disability have their feelings of being able and
self-confident shattered. The family needs to adapt to their new reality and reorganize itself to
cope, and this takes time. The family needs to reconstruct their identity as a family group while
dealing with feelings of vulnerability and strong emotions. Some families are able to cope and
others suffer with hopelessness, dismay, and fatigue. The family structure may be overloaded by
the constant care that must be given to a disabled child (Barbosa et al., 2012).

The family is the constant element in the care of a child with intellectual disability and therefore
the importance of the family's participation in the care of their child must be recognized as the
family and its members are participant agents in the care of their disabled child. The family must
be provided services to make it stronger and capable to deal with its own problems and decision
making (Barbosa et al., 2012). Occupational therapists can provide services that support families
to improve their satisfaction, parenting behavior, personal and family wellbeing, social support,
and child behavior (AOTA, 2016a).

H. Physical Therapy

Physical therapy is a component and a primary service of Early Intervention (American Physical
Therapy Association, n. d.). The goal of physical therapy for the infant or young child with
intellectual disability is to provide activity-focused interventions that incorporate structured
practice and repetition of functional actions that help him learn motor tasks that facilitate his
participation in daily routines and interaction with his family and his environment (Valvano &
Rapport, 2006). Physical therapists help families with their child's development and ability to
participate in age-appropriate activities with their family, friends, and neighbors. Physical therapy
in early intervention for infants and young children include the following developmental motor
skills as goals to be pursued (APTA, n. d.):

1. Crawling/walking: Learning to crawl or walk are important milestones as it allows an
infant or young child to move from place to place.
2. Sitting: Learning to sit gives an infant or young child a different visual perspective on
his world and the ability to play on the floor with his friends/siblings and toys.
3. Balance: Improving a young child's balance allows him to walk in different
environments such as sand or grass.
4. Strength: Being strong allows a child to keep up with his peers.
5. Fitness: Being fit allows a child to be active with his peers.
6. Manipulating objects: Holding, exploring and playing with toys or objects of different
sizes, shapes, and weights increases an infant/child's fine motor skills.
7. Coordination: Developing coordination increases an infant/child's ability to run, climb,
slide, and jump.
8. Holding/clasping objects: Helps a young child to learn how to hold objects, to build, to
create, and participate in self-care activities (APTA, n. d.).
19

These motor skills must be pursued by parents and families in working with their child with
intellectual disability to promote their mobility. In addition, recent research has demonstrated that
early intervention with a focus on key perceptual-motor behaviors can improve a child's ability to
participate in the present as well as advance his future development across domains. Object
interaction, sitting, and locomotion are suggested in the literature to be important early behaviors
that facilitate global development and should be the keystone of early intervention. Early
perceptual-motor intervention provided to infants/young children with intellectual disability
improve their development in object interaction, sitting, and locomotion when compared to
infants/young children not receiving early perceptual-motor development as shown in Graph 1.
These interventions have been shown to advance cognition, communication, social interaction, and
other abilities that are important in improving daily function and quality of life for children with
intellectual disability (Lobo, Harbourne, Dusing, & McCoy, 2012).

Graph 1

I. Speech-Language Therapy

The practice of speech-language therapy within the early intervention framework provides
infants/toddlers/young children with intellectual disability with services for their communication
needs (American Speech-Language-Hearing Association, 2008). When a child has difficulty
producing speech sounds correctly or fluently, he has a speech disorder. When a child has
difficulty understanding others (receptive language) or sharing thoughts, ideas, or feelings
(expressive language), he has a language disorder (American Speech-Language-Hearing
0
5
10
15
20
25
30
35
40
Object Interaction Sitting Locomotion
Age in Months
Perceptual-Motor Development in Typical Children and
Children with Intellectual Disability
Child with Typical Development
Child with Delayed Development and Effective Early Perceptual-Motor Intervention
Child with Delayed Development, and No or Ineffective Early Preceptual-Motor Intervention
20

Association, 2016). Speech therapists address disabilities and delays in communication, speech,
emergent literacy, and feeding/swallowing. Speech therapists can and must be assisted by the
parents or caregiver of the child (American Speech-Language-Hearing Association, 2008).

Closely related to speech and language disorders are swallowing and feeding disorders. Speech
therapists play a primary role in treating swallowing and feeding disorders. Feeding and
respiration are primary functions which use the same anatomic structures that are used for speech,
a secondary function. Low muscle tone affects both speech and feeding. In eating, children are
practicing for speech by coordinating and strengthening the muscles that will eventually be used
for speech. Difficulties in feeding usually are a precursor to difficulties with speech and can be
addressed by the parents/caregivers (National Down Syndrome Society, n. d.).

Effective communication is monumentally important in all aspects of human functioning,
especially in learning and social interaction. An individual's development of communication skills
begins at birth (American Speech-Language-Hearing Association, 2008). The age at which
language development is most intensive is between three to five years. This development of
language parallels the maturation of the brain structures. Children with intellectual disability are
at a higher risk of developing speech and language disorders and therefore they are generally still
in the early stage of language learning at the age of three to five years, having only acquired a few
words (Memisevic & Hadzic, 2013).

Speech and language disorders are among the main symptoms of intellectual disability and if they
are not treated early, there can be long lasting negative effects on the child's development. Fifty-
five percent of all children with intellectual disability have speech and language disorders. All
children with severe to profound intellectual disability have speech and language disorders. Almost
all children with moderate intellectual disability (93.9%) and almost half of the children with mild
intellectual disability (49.4%) have a speech or language disorder. Early intervention, with regards
to speech therapy has proven to be successful in the adaptive, social, and academic areas and
should begin at the earliest possible age with the help of the child’s parents/caregivers (Memisevic
& Hadzic, 2013).

J. Conclusion

Intellectual disability is so life consuming that parents and primary caregivers of an
infant/toddler/young child with intellectual disability are the most important and irreplaceable
therapists a child with intellectual disability can have. Early intervention specialists or
developmental therapists coordinate the occupational therapist, physical therapist, speech
therapist, and others in their role of providing services to a child with intellectual disability. It is
their responsibility to see that those who are involved in delivering professional services do so in
a family-centered and culturally and linguistically responsive manner. They must see that the
services are developmentally supportive and promote the child's participation in their natural
environment. The early intervention specialist must see that the services received by the child are
comprehensive, coordinated, and team based, all the while making sure that the services are based
on the highest quality evidence available (American Speech-Language-Hearing Association,
2008). The early intervention specialist must work collaboratively with the professionals and the
parents/primary caregivers as they will be responsible for their child's development.
21

The underlying premise for early intervention is that it will make a difference in the life of a child
with intellectual disability. However, in the Dominican Republic there is a lack of services for
children with intellectual disability. Without professional support and intervention, the family is
left to its own devices. The child’s growth and development will be affected. His or her growth
trajectory will be altered in the downward direction. Without help many of their challenges will
not be managed and their life will not be as good as it could have been. Some problems will not
be alleviated. The child with intellectual disability may digress in his or her social and cognitive
development. Dominican parents or primary caregivers must take responsibility for the growth and
development of their child, but they are lacking the tools to do so.

22

CHAPTER 2
Intellectual Disability in the Dominican Republic

The Dominican Republic is a small island nation with a relatively young population. Due to the
country’s poverty, they are unable to meet sufficiently the needs of their growing population with
regards to education and mental health care. The Dominican Republic, as a member of the United
Nations and other international organizations, supports the cause of human rights and rights for
the disabled through their passage of certain laws protecting their citizens. However, they have not
been able to put their good intentions into practice due to their economic situation and widespread
poverty. This chapter on the Dominican Republic contains two sections. The first section contains
general information about the Dominican Republic, which provides the context in which children
with intellectual disability are currently served. The second section discusses the Dominican
Republic as the study site for this project. The chapter closes with a summary of key points.

I. Context
A. The Dominican Republic
The Dominican Republic is an island country that belongs to the Greater Antilles in the Hispanic
Caribbean. Haiti is its neighbor to the west, and the two countries share the island of Hispaniola.
The Dominican Republic has an approximate geographic area of 48,670 square kilometers. As of
July 2015, the Dominican Republic had an estimated population of 10,478,756 people. Its
population is 73% mixed African/Caucasian heritage, 16% white, and 11% black (Central
Intelligence Agency [CIA], 2015). The Dominican Republic has a relatively young population
with 27.53% of its population under the age of 15 and 7.23% of its population over the age of 65
(World Health Organization [WHO], 2008). Twenty-one percent of the population is concentrated
in rural areas, and 79% of the population is concentrated in urban centers (CIA, 2015). This
unequal distribution of the population between the urban and rural areas has exacerbated the
contrasts resulting from the unequal distribution of income, migration, and marginality (WHO,
2008). Life expectancy at birth is 75.76 years for males and 80.28 years for females. Ninety-five
percent of the Dominican Republic’s population is Catholic and Spanish is the official language
(CIA, 2015).

B. Public Education
In 2013, the Dominican Republic’s educational system, according to the World Bank, was ranked
163, among the worst in the world. The Dominican Republic has many problems at the root of
their schools’ failures. Test scores for students in the urban areas are just as low as the test scores
in rural areas. They struggle with overcrowded classrooms in shoddy facilities, high dropout rates,
outdated curricula, and overage students who fail classes and therefore must repeat grades. Despite
these situations, the biggest problem facing the Dominican Republic’s schools is the problem of
poorly trained teachers (Manning, 2014).

23

Public education in the Dominican Republic is free to all students. Attendance in school is
compulsory until the age of fourteen, but it is not strictly enforced, especially in rural areas.
Preschool is offered for children ages three to six, but only the last year is compulsory. After
preschool, there are six years of primary education, followed by two years of middle school
education. Secondary education is for those fourteen to eighteen years old and who have
successfully completed the lower grades. It is not mandatory. Therefore, only about 10% of the
student population completes their secondary education (Overview Education in the Dominican
Republic, 2015).

Since 2010, access to education has increased at the basic and higher levels. This increase is due
to an increase in the money spent on education and the implementation of programs strengthening
basic education, improving the coverage and quality of basic education, and serving breakfast.
Despite these advances, there is still tremendous inequality in access between the urban and rural
areas. The rural areas are at a disadvantage because of the distance of the schools from the
population. Also, there is the internal inefficiency of the educational system as can be seen by the
repetition of grade levels and the dropout and overage rates. These challenges limit the provision
of quality public education for the children and adolescents of the Dominican Republic (United
Nations Children’s Fund [UNICEF], n. d.).

According to Dominican Law 136-03, all children within the country have a right to a quality
education. It is the responsibility of the Ministry of Education to provide free basic education to
all and access to free secondary education, including vocational training for all adolescents
(UNICEF, n. d.). However, there are not enough teachers, facilities, or funding to meet the
demands of the unusually large Dominican school-age population, even taking into consideration
the many private and religious schools that supplement the state-financed schools (Education in
Crisis: Dominican Republic, n. d.). This situation has been improving since 2012 when voters
convinced all presidential candidates to promise, if elected, to double the education budget. The
current president, Danilo Medina, is taking on education reform in the Dominican Republic. The
country’s goal in 2014 was to spend 4% of its GDP, almost 2 billion euros, on education (UNICEF,
n. d.).

C. Mental Health System
The Dominican Republic does not have an explicit mental health policy. However, in 2006 the
State Secretariat of Public Health and Social Assistance (SESPAS) announced the government’s
new general health policy. This public statement was made during the official enactment of the
new General Health Law, which became the foundation for the country’s new national health
policy. Mental health is specifically mentioned in the new general health policy. Also, the
Dominican Republic enacted a national ten-year health plan (2006-2015), which included mental
health (WHO, 2008).

In 2006, Dominican Law No. 2-06 was enacted, which updated the national standards for mental
health care. This law stipulates that every individual has the right to receive the best mental health
care available and provides guidelines for protecting the fundamental freedoms and rights of
persons with intellectual disability, developmental disorders, and mental disorders. The mental
health plan was revised in 2010 and included new components: a timeline for the implementation
24

of the mental health plan, funding allocation for the implementation of half or more of the items
in the mental health plan, shift of services and resources from mental hospitals to community
mental health facilities and integration of mental health services into primary care (WHO, 2011).

D. Mental Health Services
The State Secretariat of Public Health and Social Assistance (SESPAS), a national authority that
advises the government on mental health policies and legislation, is involved in service planning,
monitoring, and assessment of mental health services. SESPAS allocates less than 1% (0.38%) of
health care expenditures for mental health services, and 50% of these resources are directed
towards the Padre Billini Mental Hospital (WHO, 2008), which has 263 beds. In terms of mental
health facilities, 81% (59) are outpatient services, and there are 54 beds for inpatient psychiatric
units within general hospitals. There is only one mental health hospital, one day-treatment center,
and two residential facilities in the country (WHO, 2011).

In relationship to the installed capacity of health services, there were 9,481 hospital beds in the
public sector (11 per 10,000 population) in 2006, and 10,380 physicians (12 per 10,000 population)
of which 61% were general practitioners. In terms of primary care, there were 1,273 physician-
based primary health care centers in the country. Most of these health services were in urban areas.
Almost all psychiatric beds are concentrated in the mental health hospital and psychiatric units
within general hospitals, which are in the country’s capital and urban areas. This concentration of
resources in urban areas prevents rural users from accessing mental health services (WHO, 2008).

Sixteen percent of the mental health services in the country are provided by inpatient psychiatric
units within general hospitals. Their mental health services are similar to crisis intervention units
or short stay admissions. The Padre Billini Mental Health Hospital in Santo Domingo is not
organizationally integrated with mental health outpatient facilities and does not provide treatment
for children or adolescents. The patients admitted to this hospital are diagnosed primarily with
mood disorders and schizophrenia. Around 59% of patients spend less than one year in the mental
health hospital, and the average length of stay is 19 days. The hospital has an occupancy rate of
79% (WHO, 2008).

Mental health services in the Dominican Republic have been poorly developed at the first level of
care and no regular training programs on mental health are developed for primary care staff.
Although all primary health care centers in the country have a medical doctor, they do not have
assessment and treatment protocols for key mental health conditions available (WHO, 2011).

Only 4% of outpatient services are directed towards the mental health care of children and
adolescents, and there are no children or adolescent inpatient units or forensic psychiatric units in
the country. The users treated in outpatient facilities are primarily diagnosed with affective
disorders and schizophrenia, and some (21-50%) receive one or more psychosocial interventions
during a calendar year (WHO, 2008).

25

E. Human Rights

The United Nations and the Inter-American Human Rights system have a significant body of legal
instruments that can be used to protect the rights and liberties of all persons. These instruments
protect all persons without distinction of any kind with regards to race, color, sex, language,
religion, political or other opinion, national or social origin, property, birth, or other status. They
also include the protection of the rights and freedoms of persons with mental disabilities, i.e.,
intellectual disability. The Dominican Republic is one of the many nations to embrace the
“International Instruments for the Protection of Basic Human Rights and Freedoms of Persons
with Mental Disabilities,” which includes protected basic rights, i.e., life, humane treatment,
personal liberty, fair trial, privacy, freedom of expression, protection of persons with disabilities,
and protection of older persons (Ventura, 2014).

The Convention on the Rights of the Child was also signed by the Dominican Republic and
contains human rights provisions concerning children and adolescents. Article 23 recognizes the
right of children who suffer from physical or mental disabilities to receive special care. This article
also establishes measures that States’ Parties should take to guarantee the development of the child
as an individual and ensure his or her participation in the community. Article 24 recognizes the
right to the enjoyment of the highest attainable standard of health. Article 25 recognizes the right
to periodic review of treatment given to children placed in institutions for physical or mental health
reasons. Article 27 recognizes the right of child to be protected from performing any work likely
to be hazardous or to interfere with his or her education or to be harmful to their health or physical,
mental, spiritual, moral, or social development. The Convention establishes the United Nations
Committee on the Rights of the Child as the treaty body for promoting and protecting the human
rights contained in this instrument (United Nations Office of the High Commissioner for Human
Rights [OHCHR], 2002).

The Convention on the Rights of Persons with Disabilities and its Optional Protocol were adopted
on December 13, 2006 at United Nations Headquarters in New York and opened for signature on
March 30, 2007. There were 82 signatories to the Convention, one of which was that of the
Dominican Republic (OHCHR, 2015). This instrument was the first comprehensive human rights
treaty of the 21st century. It was intended to be a human rights instrument with an explicit social
and economic development dimension (OHCHR, 2014). It reaffirms that all persons with all types
of disabilities (including intellectual disability) must be able to enjoy all human rights and
fundamental freedoms. It clarifies and qualifies how all categories of human rights and
fundamental freedoms apply to persons with disabilities. It also identifies areas in which
adaptations have been made for persons with disabilities to effectively exercise their rights
(Ventura, 2014). Even though the Dominican Republic signed and supported these instruments,
there is no national review body with the authority to oversee human rights inspections in mental
health facilities or to impose sanctions on facilities that violate patients’ rights (International
Disability Rights Monitor, 2004).

F. Rights of the Disability Population in the Dominican Republic

The Dominican people are very proud of the fact that the Dominican Republic is a founding
member of the United Nations, having ratified the United Nations Charter on June 26, 1945. The
26

Dominican Republic, since ratifying the Charter in 1945, has been actively involved in many of
the United Nations’ initiatives, especially in the area of human rights. They have signed many of
the United Nations’ legal instruments with regards to education, the rights of children, and the
rights of the disabled (United Nations, n. d.). The welcome message on the Dominican Republic’s
Permanent Mission to the United Nations website states, “. . .The Dominican Republic, its
government, and its people, reaffirms its commitment to the historical mission of the United
Nations and its capabilities to deal creatively with the challenges of the world today. . .”
(Permanent Mission of the Dominican Republic to the United Nations, n. d.).

The Dominican Republic has also been involved with the Organization of American States, the
Inter-American Human Rights System, the World Health Organization, the Pan American Health
Organization, the Convention on the Rights of the Child, and the Caribbean Conferences on Mental
Retardation (Permanent Mission of the Dominican Republic to the United Nations, n. d.). Because
of their involvement with these organizations, the Dominican Republic has passed laws protecting
and promoting the well-being of its citizens. The first law passed that provided specific provisions
for the disabled was Law 87-01 which established the Dominican Social Security System, which
became effective June 10, 2001 (International Disability Rights Monitor, 2004).

The first paragraph of the preamble to Law 87-01 expressly references people with disabilities,
stating, “The Dominican State shall foster the progressive development of a Social Security system
so that every person can be adequately protected during unemployment, ill health, disability and
old age,” (United Nations Committee on Economic Social and Cultural Rights [CESCR], 2009).
The preamble also states that one of the objectives of the law is, “to effectively contribute to
improving living standards, to reduce poverty and social inequalities, to protect the helpless and
the disabled,” (CESCR, 2009).

Despite the existence of these provisions, the Dominican Republic has a clear need for a specific
organization to protect the rights of people with disabilities. There is no Ombudsman Office or
other institution with which to file complaints regarding human rights violations (International
Disability Rights Monitor, 2004).

G. Programs for the Disabled in the Dominican Republic

There are no available statistics on the number of people with disabilities in the Dominican
Republic. The widely-cited World Health Organization estimates that an average 10% of the world
population consists of people with disability (WHO, 2005). Based on that rate and using figures
from the latest Population and Housing Census, the number of people with some type of disability
in the Dominican Republic is estimated to be 1,047,876 (CIA, 2015).

The government of the Dominican Republic does not provide services to its disabled population
but relies on non-government organizations (NGOs) to provide direct services, including special
education. The services provided by the NGOs are divided into medical rehabilitation and special
education. The largest NGO is the Dominican Rehabilitation Association (ADR), which provides
both medical rehabilitation and special education. ADR has a presence in most of the provinces of
the Dominican Republic. They have a few home education services with 3-4 teachers as staff and
visit a limited number of children. The next largest NGO is the Cibao Rehabilitation Society.
27

Their center is located in the province of Santiago and they provide medical rehabilitation and
some vocational training (Bekker, 2011). There are approximately a dozen private schools serving
children with various special needs in the capital city of Santo Domingo; however, only the
wealthy can afford to send their children to one of these private schools (DR1-Living, 2015).

There are several faith based organizations in the Dominican Republic that serve the disabled, and
a few of them focus their efforts on young children with intellectual disability, aged 0-5 years.
Prominent among them is International Child Care (ICC), a Christian health development
organization that has been in the Dominican Republic since 1988. ICC’s program serves the city
of Santiago and trains community rehabilitation workers to visit families with disabled children.
The goal of ICC is to have its community rehabilitation workers teach caregivers in the home
simple rehabilitation exercises to perform with their disabled child. (International Child Care,
2007). In 2003, ICC’s Dominican branch became a nonprofit organization and became known as
the Fundación Cuidado Infantil Dominicano (United Methodist Committee on Relief, 2015). There
are some faith-based organizations that maintain group homes for children with developmental
disabilities, including intellectual disability. The Dominican Republic Lutheran Mission and
Mustard Seed Communities both provide services to abandoned or abused children with special
needs (Dominican Republic Lutheran Mission, 2016; Dominican Republic-Mustard Seed
Communities, 2016).

The Dominican Republic is a non-industrialized country with all the accompanying problems of
such and therefore there is much work to be done for Dominican citizens with intellectual
disability. The Dominican Republic has shown its good will and intentions in support of the United
Nations by signing the UN’s legal instruments with regards to the rights of children and the rights
of the disabled. With the help of the United Nations, policies and laws are changing in the
Dominican Republic. Under the leadership of the National Council for Children and Adolescents
and the Ministry of Education, a consultative panel on early childhood was developed to integrate
policies on health, nutrition and early stimulation with special emphasis given to children under
the age of three (UNICEF, 2012). The National Council on Disabilities in the Dominican Republic
has launched a national development strategy by establishing a bureau for children with disabilities
(OHCHR, 2015).

The Office of the First Lady, along with technical support from UNICEF, has encouraged and
facilitated cooperation among various national departments concerned with education, health,
disability, and human/child rights to cooperate and share information (OHCHR, 2015). Although
progress is slow, there is a positive movement within the Dominican government to improve the
lives of its most vulnerable citizens, the children with intellectual disability, but it is also important
to note that even though there have been some advancements to improve their condition in urban
settings, minimal impact has taken place in rural settings.

II. Dominican Republic as a Study Site
There are two characteristics that make the Dominican Republic a good choice for this study site,
poverty and culture. Poverty is associated with the prevalence of intellectual disability and poverty
is prevalent in the Dominican Republic. Poverty creates the need for outside help in providing
services to Dominican children with intellectual disability. The culture of the Dominican Republic
28

creates the environment in which the family can be of assistance to their disabled loved ones. The
Dominican family culture dictates that family members assist their disabled relatives to live better
lives than would otherwise be possible. Poverty and the Dominican culture have created an
environment in which a manual such as this one would be of assistance and appreciated.

A. Poverty

The Dominican Republic and its citizens lack the resources to fulfil their basic needs. Most
Dominicans are deprived and vulnerable due to a fundamental lack of income to obtain food,
clothing, adequate housing, and health care. The country and its people suffer from tremendous
income inequality. The poorest half of the country receives less than 20% of the Gross Domestic
Product (GDP) while the richest 10% enjoy nearly 40% of the GDP. High unemployment and
underemployment remain a long-term challenge (CIA, 2015). The World Bank does not have any
data for the Dominican Republic for the year 2014, but they estimate the Dominican Republic’s
GDP, per capita for 2014, to be $13,000. Their Gross National Income (GNI), per capita, according
to the Atlas Methodology 2014, is $6,030, which ranks them 114 in the world for GNI, per capita
(World Bank, 2016).

At this time, the Dominican Republic has healed as best it could from the global recession of 2010-
2014 (CIA, 2015). Currently, based on the World Bank’s criteria, the Dominican Republic is
classified as a lower middle-income group country with widespread poverty in both its rural and
urban areas. This poverty creates an environment in which children are put at risk for malnutrition,
childhood diseases, exposure to environmental health hazards and inferior health care. These
indicators increase the risk of intellectual disability (The Arc, 2016).

Epidemiological studies consistently report a significant association between the prevalence of
intellectual disability and poverty (Emerson, 2007). The two major deficits associated with
poverty, the lack of financial resources, and the lack of adequate health care significantly affect
neurological factors and behavior. Poverty, in a major way, affects how people in the Dominican
Republic live their lives and what resources they have to meet the challenges they face in their
lives (Marston, 2013).

More specifically, there is significant evidence in the literature that poverty affects
neurobehavioral development. A higher prevalence of intellectual disability is found in those who
live in poverty. Intellectual disability occurs in 3 to 5 individuals per 1,000 individuals in high-
income countries, but it occurs in approximately 22 out of 1,000 individuals in developing
countries with widespread poverty. Protein-energy malnutrition, dietary micronutrient
deficiencies, environmental toxins, and lack of early sensory stimulation are the reasons identified
for the higher rates of neurobehavioral disorders among those individuals living in poverty
(Bergen, 2008). Maternal malnutrition during pregnancy impacts the development of
communication and social abilities and contributes to intellectual disability in individuals living in
poverty (Morris, 2008). In lower-income households, children are found to have lower brain
volume in the hippocampus and amygdala compared to children in higher-income households
(Noble, Houston, Kan, & Sowell, 2012). This is consistent with studies that demonstrate that
individuals in lower-income households have difficulty with their working memory, which is
consistent with impairments in the hippocampus and amygdala (Evans & Schamberg, 2009).
29

Chronic stress, which is associated with poverty, impacts the development of the prefrontal cortex
(Marston, 2013). Problems with the prefrontal cortex are associated with deficits in executive
functioning, cognition, language, sociability and emotion (Rinaldi & Morkham, 2008). According
to Noble, Normon, and Farah (2005), the prefrontal cortex is one of the primary neurological
systems impacted by poverty and there is a significant difference between children in higher-
income households and children in lower-income households with regards to their executive
functioning (Lipina, Martelli, Vuelta, & Colombo, 2005). Poverty, through the mechanism of
chronic stress, is a significant factor to impairments in the hippocampus, amygdala, and prefrontal
cortex.

B. Culture

In many ways, the culture of the Dominican Republic sets the stage for its treatment of individuals
with intellectual disability in their society. The Dominican Republic is a family-oriented society.
Loyalty is ingrained in Dominican family members and outsiders are suspect. The family and kin
trust one another and they depend on each other or neighbors for help, assistance, and solidarity.
This is especially true in the rural areas (Metz, 1999).

Five to eight generations ago, the valleys and municipalities of the rural areas (the campo) of the
Dominican Republic were settled by a few related families. One or two families would settle in an
area or valley of the campo and extensive kinship relationships through intermarriage and
compadrazgo (co-parenting) developed among the descendants of these original settlers. These
relationships still exist today. The extended families are near neighbors and marriage is common
among these near neighbors and even, although illegal, among first cousins. Rural social life is
experienced among near neighbors and blood relatives in the campo (Metz, 1999).

In the rural areas of the Dominican Republic, there still exists a core of related families that are
expected to help their family members both economically and socially. Co-parenting is prevalent
among them, as they trust one another. The bonds of trust and confidence that are generated in this
environment make it difficult for the development of outside community organizations such as the
Peace Corps or NGOs to establish themselves and they are handicapped by the distrust that the
local rural population has for outsiders. Formal organizations succeed best in the campo of the
Dominican Republic when they can mesh with pre-existing kinship systems (Metz, 1999).

C. Conclusion

Poverty and culture are the two main reasons to select the Dominican Republic as the study site
for this project. The Dominican Republic needs help and support as it suffers from the same
problems that all undeveloped countries do, poverty. Poverty, the characteristic common to all
undeveloped countries, is the driving force behind many of the Dominican Republic’s challenges.
Poverty creates a lack of services, both medical and educational, and this lack of services is more
evident and pronounced in the rural areas of the Dominican Republic. Culturally, the family
structure in the Dominican Republic makes it amenable for the family to take on the responsibility
of caring for their own, and the family is willing to do so for the life of a disabled member. Without
the assistance of professionals such as occupational therapists, physical therapists, and speech
30

therapists during the early years of a child with intellectual disability, his or her developmental
trajectory is lowered and altered. Parents/caregivers/volunteers become the child’s therapists. They
are only lacking the means and support to do so, as there is no homebased-family manual to aide
in the effort.

31

Chapter 3

Methodology and Review of Existing Manuals/Materials

The manual was developed to provide a culturally competent hands-on instrument directed at
parents, caregivers, and volunteers to provide hope and to give insight into how best to assist
children with intellectual disability in rural communities in the Dominican Republic. As such,
this manual is unique in its purpose of offering hope, comfort, and care for both children
with intellectual disability and their families.

This manual has been evaluated for its vocabulary and readability using the application:
online-utility.org/english/readability_test_and_improve.jsp, which utilizes the Coleman Liau
index, Flesch Kincaid Grade Level, ARI (Automated Readability Index), and SMOG. In the rural
Dominican Republic, adult literacy and reading levels are low. Therefore, the manual has a reading
level of grades 3-5. Additionally, the manual was reviewed by persons who have lived or presently
live in the Dominican Republic to determine applicable level of reading skills as well as cultural
competency with regards to training examples and illustrations depicted in the manual. This
manual is designed to be read and used by rural Dominican families, parents, caregivers and
volunteers to assist their child with intellectual disability.

Chapter 3 includes a description of the research methodology. Additionally, the review of existing
manuals/materials is included. Table 1 below includes a breakdown of the materials, the activities
undertaken, and the order in which the steps were performed.

32

I. Process for Inclusion of Materials
Table 1

Steps Activities

Step 1: Search for credible tests online that
determine the level of development of the
child.

Reviewed the Griffith Mental Development
Scales; Parents’ Evaluation of
Developmental Status (PEDS) test.

Step 2: Review the Bright Futures website
for manuals/materials/curricula.

Reviewed the Pediatric Symptom Checklist
for questions asked to determine the level of
intellectual disability.

Step 3: Search for credible manuals online
that have instructions on how to interact
with children with intellectual disability.

Reviewed the Behavioral Assessment
Scales for Indian Children with Mental
Retardation BASIC-MR.

Step 4: Manual planning & development

Existing materials:
Determine
 Appropriate questions
 Skills and activities
 Cultural sensitivity
 Ease of use and practicality

Step 5: Review the American Occupational
Therapy Association’s Evidence-Based
Practice Occupational Therapy’s Guidelines

Determine which guidelines apply to
children with intellectual disability in the
Dominican Republic.

Step 6: Review the Individuals with
Disabilities Education Act (IDEA)

Incorporate the family in the therapeutic
regimen of the child.

33

The first step in developing the manual was to search out developmental tests for children from
birth to 5 years of age. The thought behind this action was that the tests would give insight into the
important stages of development and skill mastery of a young child. Assessment of a child with
difficulties is the starting point in treatment and this manual includes simple tests to be performed
by parents/caregivers/volunteers to help them assess the developmental status of their child.

Step two entailed reviewing the Bright Futures website for manuals. This step gave a general idea
of the types of manuals to search out and an assessment tool that could be utilized. Step 3 included
a search for credible manuals that had previously been developed for use in other
environments/cultures. One specific book/manual of interest which was reviewed was the
Behavioral Assessment Scales for Indian children with Mental Retardation-MR. This was of
interest because this manual deals with children living in rural areas in a non-industrialized country
such as the Dominican Republic. In all, more than 20 manuals were analyzed for the appropriate
data to incorporate into a manual for children with intellectual disability in the Dominican
Republic. Out of the approximate 20, only a few had solid information that parents/caregivers in
the Dominican Republic could utilize to make a significant impact in the lives of their children,
birth to five years of age, with intellectual disability.

Step 4 involved planning the manual and developing appropriate questions and activities, being
sensitive to the Dominican culture, and at the same time keeping in mind that the manual must be
easy to use and practical. Some of the questions and activities that were included in the manual are
slightly different from the reviewed manuals in order to make them appropriate for the Dominican
Republic. The activities and skills included in the manual were evaluated and compared in step 5
with the American Occupational Therapy Association’s Evidence-Based Practice Occupational
Therapy’s Guidelines for final inclusion in the manual. In step 6 the Individuals with Disabilities
Education Act (IDEA) was reviewed for information regarding incorporating the family
appropriately into the therapeutic regimen of the child (Center for Parent Information and
Resources, 2014).

II. Criteria for Comparison

To assure that the manual is practical and easy to use in the Dominican Republic the following
criteria were applied:

a) The manual asks questions which are not culturally-biased, i.e., reference items which can be
expected of children in the Dominican Republic.

b) The manual asks questions that are developmentally appropriate for children from birth to five
years of age.

c) The manual is appropriate for the literacy level of targeted parents, caregivers, or volunteers
teaching children with intellectual disability (3
rd
to 5
th
grade level).

34

III. Current Best Practices

Most current best practice instruments and training materials for children with intellectual
disability have been developed in Western countries and are in English. For example, the Griffith
Mental Development Scales. The Griffith Mental Development Scale is an easy and effective tool
that parents, caregivers, and volunteers can utilize to assess developmental delays in children from
birth to 5 years (Child Psychologist, 2015). Activities in this test can easily be conducted by
parents, caregivers and volunteers in the Dominican Republic. A six-part test assesses motor skills,
personal-social skills, hearing and language skills, eye and hand coordination skills, and the
reasoning skills of the child. These tests are similar to those included in this manual, such as
exercises in which the child keeps an object in his hands for 30-60 seconds, moving his head if his
name is called, and making food with his mother (Quirky Kid, 2015).

Another current best practice is the Parents’ Evaluation of Developmental Status (PEDS) test,
which is an evidence-based method that includes a simple questionnaire consisting of 10 questions
that can be asked by parents, caregivers, or volunteers. The PEDS test helps detect intellectual
disability in children from birth to approximately seven years of age. The questions on the PEDS
questionnaire are similar to the questions in the Griffith Scale of Mental Developmental Status in
that it asks how well the child gets along with his or her peers, how social they are, and how they
express themselves. This aspect of the child’s social development is included in this manual,
specifically in the section that recommends asking parents questions about their observations of
their child’s behavior (Glascoe, Marks, Poon, & Macias, 2013).

Another test, the Pediatric Symptom Checklist, developed by Bright Futures, is a psychosocial
screening test that aids in the identification of any behavioral, emotional, or cognitive difficulties
or impairments. There are two ways to conduct this test, one in which the parents conduct the test,
and the other, a self-reported test by the youths themselves. For this manual, the parent-
administered test will be the focus. The examination contains 35 questions for children who are
four and five years old with a cutoff score of 24, which indicates psychosocial impairment (Bright
Futures, 2015).

The Portage Project is yet another method that teaches parents what they need to know to become
more involved in the learning process of their child by supplementing their child’s education at
home. This is done by observing the child’s behavior at home and recording observations to share
with teachers as well as reinforcing certain aspects of the education that the child receives at
school. The Portage Project is important because it serves children with disabilities from 0 to 6
years of age, and it deals with a wide range of disabilities—intellectual, physical, and emotional.
The aspect that makes the Portage Project unique is that, unlike some other tests that measure IQ
or test scores, this project is more concerned with the behavior of the child. Thus, when observing
the child, teachers can assess their abilities and provide them with an individualized academic plan.
This can be more practical and effective since it relates to real-life activities, which can better
prepare the child to become more independent later in life. For example, if a child has difficulty
going to the bathroom alone, his/her parents can observe how often the child utilizes the bathroom,
how often he or she can go without help, and possibly help the child to become more independent
(Shearer & Shearer, 1976).

35

In addition to exercises designed to build mental capacity and become more independent, it is also
important to help the child physically. This is particularly important for children with intellectual
disability because they can use what they learn in physical activities and apply it to other areas in
their daily life. Many of the exercises that parents, caregivers, volunteers are instructed to do are
meant to help children with their motor skills; therefore, exercises can aide in the child’s motor
skills and building self-confidence for other tasks as they age (Fraglala-Pinkham, 2008).

One manual that was evaluated primarily focused on the training of volunteers. It recommends
that volunteers not focus excessively on a child’s disability and to speak to them as they would to
any other child. It is important to use language that is concrete and not vague or confusing. It is
also important to speak in short, simple sentences, because the child might have a hard time
remembering too many facts at once. The parent/caregiver/volunteer should mention two or three
facts at a time, and allow the child to understand and respond to them first before moving on to
another task. Some children might need visual cues in addition to verbal instructions. Visual cues
would consist in demonstrating how to perform the task. Some children might get distracted easily,
and it is important to remember that distraction should not be mistaken for rudeness (Volunteer
Training Manual, 2016).

There are currently different training manuals that assist parents and volunteers in testing children
from birth to 5 years of age to assess them for intellectual and/or developmental disabilities. One
such manual is called the Behavioral Assessment Scales for Indian Children with Mental
Retardation BASIC-MR. This manual features a questionnaire with simple questions for parents
or caregivers to answer, such as whether the child can hold small cubes in their hands for
approximately 30 seconds, clap their hands, crawl a short distance, throw a ball in a specific
direction, kick a ball in a specific direction, or take a certain number of steps (Peshawaria &
Venkatesan, 1992).

Among a few best-practice materials developed in countries like the Dominican Republic is a
manual developed and field tested in Jamaica where they are trying to enhance the quality of
education that their children receive. In pursuit of this goal, a training manual was created for
parents and volunteers that allows them to conduct tests to observe the abilities of their children,
especially those who have what they call “exceptionalities.” The assessment consists of observing
the child, interviewing the family, conducting a rating scale and a few examinations that are
informal, and lastly, a standardized examination. The training manual is informative because it
outlines what disabilities to look for such as audio or visual ones, or not being able to read. This
training manual advises asking students with intellectual disability to repeat the questions they are
asked to verify their understanding. In addition, it offers strategies by encouraging instructors,
parents, and care providers to reduce the amount of information given to a child into smaller
segments for students with intellectual disability and to talk at a slower and/or deliberate pace so
that the student will comprehend and better understand (Ministry of Education, 2007).

Studies of the benefits of early intervention programs focus on documented increases in children’s
level of independence, decreasing the burden on their parents and/or caregivers. Early intervention
might also lower overall healthcare costs since families will be able to take charge of their own
well-being with this type of mentorship. In a study entitled the Infant Health and Development
Program, which “was an eight-site…for low birth weight…infants…consisted of home
visits…intensive center-based services…and bimonthly parent groups…The home visit[s] focused
36

on learning activities tailored to the individual needs of the child…The major findings…were that
children…showed significantly higher cognitive scores…at 24 and 36 months” (Mahoney, Boyce,
Fewell, Spiker, & Wheeden, 1998). These studies suggest that if children with intellectual
disability in rural areas of the Dominican Republic are assisted early on in their lives, they have
an increased chance for improved cognitive gains.

The Partners for Youth with Disabilities program also demonstrates the many positive benefits of
mentoring children with intellectual disability, and the benefits that will result in their adult lives,
such as greater confidence, better academic achievement, and better productivity in the workplace.
Programs for children with intellectual disability can also help them to stay out of trouble, lead
happier lives, and have more functional relationships. Since there is a large disparity among youth
with disabilities (e.g., less involvement in the community, failing to finish high school, lack of
proper transportation, lack of an occupation), there is an ever-greater need for parents, caregivers,
and volunteers to mentor these children and assist them with different programs (Partners for
Youth with Disabilities, 2016).

It is important to include the child with intellectual disability in naturally occurring family
activities. One suggestion for any family with a child with intellectual disability is to choose one
day in the week and do something fun. This could include a range of different activities, from
taking the family to grandma’s house, playing games, or having a picnic in the park. The point is
for the entire family to spend quality time together, in a stress-free environment, where the
emphasis is not on performing any intellectual exercise, but on supporting one another, so that the
child knows that he or she can count on his or her family in times of need (Raising Children
Network, n. d.). Additionally, the family should have one meal per day together as a family because
research has shown a correlation between eating meals together as a family and children staying
out of trouble. By doing this the child feels more connected to his or her family and thus more
comfortable in talking to family members about problems (McEntire, n. d.).

Parents must be involved in coordinated planning as the school alone cannot give the child all that
he or she needs to become more independent later in life. This is emphasized in programs such as
A Team Approach, in which coordinated planning is emphasized. One aspect crucial to “success
in collaborating with families of young children with special needs is a commitment to coordinated
planning and communication between teachers and early intervention staff. Only with teamwork
can we reach out and support families…Establishing ongoing communication is key as well”
(Kaczmarek, n. d.). Families are encouraged to get involved with their communities and encourage
their children to do the same, so that their children can not only feel connected to their families,
but also to their communities, giving them a sense of responsibility and belonging. Families are
also encouraged to form and attend community and school meetings where they can share their
concerns regarding their children’s therapy and learn from other parents regarding their child’s
disability, how to cope, and how to help them in more effective ways (Kaczmarek, n. d.).

While living in a rural community in the Dominican Republic is difficult and an obstacle to
receiving better healthcare, rural Dominicans can be very superstitious, which can also affect their
interest in accessing health care. Many individuals in the Dominican Republic often blame
disability on superstitions. In addition, “many Dominicans are Catholic and hold strong religious
37

beliefs, which impact their lives in a number of ways, including beliefs and behaviors…Religious
background is related to the ideology of fatalism, that people may be destined to get a disease, so
nothing they do will make a difference in preventing disease and their concept of hope…”

(North,
2012). It is especially important for foreign volunteers (i.e., Peace Corp volunteers) to be aware
of such cultural issues and be sensitive, so that when attempting to aide children with intellectual
disability, they can have the maximum positive affect on the children without offending the people
they are called to serve.

This manual will assist parents, caregivers, and volunteers with the skills necessary to interact with
children with intellectual disability (ages 0-5) in rural communities in the Dominican Republic.
By using this manual parents, caregivers, volunteers will be able to provide their children with the
special attention that they require to become more independent and empowered to involve
themselves in their communities. This manual offers simple tests that parents, caregivers, and
volunteers can conduct in order to determine if their child has developmental concerns. It offers
tasks and exercises that can be implemented to help further the development of a child with
intellectual disability within the safety of their own family and home environment. Pictures are
included to illustrate the exercises and skills for a better understanding of the required tasks. The
manual also offers suggestions to relieve personal and family stress that is most certainly felt with
the challenge of having a child with intellectual disability.

38

Chapter 4
Manual in English and Spanish
I greatly appreciate the efforts of those who read, evaluated, and offered their thoughts and
insights with regards to best practices, general content, cultural competency, and development of
applicable illustrations to better connect to the intended beneficiaries of this manual. This manual
will be utilized and disseminated by the Peace Corps in the Dominican Republic as well as NGOs,
Faith-based organizations, and other applicable hands-on organizations.

39

Manual
for
Parents, Caregivers, and Volunteers
to teach
children from birth to 5 years
of age with intellectual disability
living in rural communities in the
Dominican Republic

Carlos E. Madrid
University of Southern California

40

Step 1: Watch

Watch what other children do. Does your child do the same things?

a) Watch children 0-5 years old playing with their friends. Write down what they are doing.
-At 0-4 weeks old: Babies should get scared at loud noises. Cry when hungry or tired. Pay
attention to a toy. Pay attention to someone’s face. Hold their heads up when they are on their
bellies.
-At 4-8 weeks old: Babies should be able to smile at faces they know. Turn their heads to
voices they know. Suck their own thumbs.
-At 3-5 months old: Babies should be able to cry for what they want. Know who is a
stranger. Reach for toys.
-At 6-9 months old: Babies should be able to sit up without help. Push themselves up with
their hands. Crawl. Wave goodbye. Sit up.
- At 12-18 months old: Toddlers should be able to pull themselves up to stand. Pick up
something with their thumb. Respond to their name. Know what they should not do. Walk. Run.
Say, "No.” Eat on their own.
-At 2-5 years old: A child should be able to use at least 40 words. Hold crayons with his
fingers. Know what time is bedtime. Know what time is lunchtime. Help with simple chores around
the house.
b) Does your child have a problem showing or saying what he wants? Does he get easily upset?
Does he play with others?

(Banegas, 2016)

41

Step 2: Sound Tests
For most children the answer would be, “Yes.”

a) Does your baby move his head when he hears his
name?

b) Does your baby make sounds showing that she likes
a toy?

c) Does your child make noises to show that he is hungry?

d) Does your child make noises when she sees a toy she
wants to play with?

Yes No
Yes No
Yes No
Yes No
42

Step 3: Easy Skills
For most children the answer would be, “Yes.”

a) Can your child hold small things in both hands for 30-60 seconds?

b) Can your child clap his hands while singing?

c) Can your child crawl around the room while playing?

d) Can your child put 4-6 things in a basket while doing the laundry with his
mother?

e) Can your child walk ten steps in a straight line?

f) Can your child open a door?

Yes No
Yes No
Yes No
Yes No
Yes No
Yes No
43

Step 4: Harder Skills
For most children the answer would be, “Yes.”

a) Can your child go upstair without help?

b) Can your child use his thumb and a finger to pick up something?

c) Can your child play marbles?

d) Can your child cut paper into shapes?

e) Can your child roll a tire to his friends?

Yes No
Yes No
Yes No
Yes No
Yes No
44

Step 5: Ask Yourself Questions
If your child cannot do these skills, talk to others. Ask these questions:

a) Do you understand the noises that your baby makes?
b) Can your child do things other children can do?
c) Does your child watch others?
d) Does your child sleep good?
e) Does your child listen to you?
f) Does your child play with others?
g) Does your child have friends?
If most of your answers are "No," your child needs special help. You can give it to him!

45

Step 6: Skills for Infants
Quiet time for baby

a) Hold your baby every day, chest to chest, skin to
skin. Do this for sixty minutes.

b) Massage your baby every night. Do this before bedtime.

46

c) Baby can sleep on his back with his mother and father.

d) Help your baby learn to roll over. Roll him over yourself on the bed. Do this until he learns
how.

e) Help your baby sit up. Put pillows around him. Practice sitting up every day. His head should
be straight up and his arms and hands in front of him.

f) Help your baby learn to suck. Put something sweet on your baby’s finger to suck. Place his
finger in front of his mouth to suck.
47

g) Put baby's chair up to the table. Cut his food into small pieces for him to eat with his hands.

h) The family can play on the floor. They can pass around a toy. Help get your baby into position
to crawl. The baby can crawl to get his toy.

i) Check your baby’s diaper every 1-2 hours. Say,
“Wet” when he is wet. Shake your head. Change him,
smile and say, “Dry.” Let him practice sitting on the
potty chair. After he poops or pees smile and say,
“Dry.” Older sisters and brothers can help. They can
show him how the toilet works.

48

j) Help your child to walk by holding his hands. He can
practice his balance.

k) Your child can play with his brothers and sisters. Put toys on the floor for them to play with.
Have your child help them to put the toys away.

l) During your baby's bath, put toys in the water
for him to play with. Tell him to pick up his toys
and hand them to you. Put them back in the water
for him to pick up again. Keep playing with him
like this.

Take Time
to Play!
49

Step 7: Skills for Children (2-5 years)
Your child can learn and practice these skills. Mother, father, sister and brother can all help!

a) Teach your child to look at you when you
say his name. Place two chairs facing each
other. You sit in one chair and your child in the
other. Tell him, "Look at me, Daniel." Say,
"Good Daniel, you are looking at me.”

b) Teach your child to come when you call his name. Put your hand on your child's shoulder. Pull
him toward you and say, "Daniel, come here." Move away. Motion to him and say, "Daniel, come
here." Move further away and say, "Daniel, come here." Keep practicing with your child.

50

c) Hold your child's hand while he holds his shoe and help him put his foot in his shoe. If you need
to, hold his hand and his shoe, but let him put his foot in the shoe. As your child gets better and
better, hold his hand and shoe for less and less time until he can do it on his own.

d) Teach your child to fill a bucket of water and carry it home.

e) On family laundry day, have your child bring the
water for the clothes. He can help too!

51

f) Have your child bring the clothes into the house after they are dry.

g) Teach your child to sweep the floor with a broom and put the dust in the trash.

h) Play patty-cake with your child.

52

i) Let your child learn to make simple foods to eat by
having him bring out the food to make.

j) Help your child learn to run by chasing
chickens with his friends.

k) Help your child learn to jump by
jumping over water puddles.

53

l) Help your child learn to eat with a spoon. Stand behind your child and place a spoon in his hand.
Place his hand on the bowl. Help him lift his food and bring it to his mouth.

m) Have your child practice picking up small things like beans or rice.

54

n) Help your child put on a shirt. Guide his
hands through the sleeves and help him
pull it down.

o) Help your child learn to wash his hands. Use a bar of soap the size of his hands. Rub his hands
together and help him rinse the soap off.

p) Help your child learn to brush his teeth.

q) Have your child walk bouncing a ball.

55

Step 8: Family Time
Your child is part of a family. He can enjoy being part of family fun.

a) Choose one night of the week for family fun night. Play games, sing songs, dance, tell stories,
or take walks. Do whatever is fun for all, do it together at least once a week!

b) Eat dinner every night as a family.
56

c) Get a small rocking chair for your child. The family can rock together when the lights go out.

d) Go to church together.

57

Step 9: Give Hope
For your child, doing some things are hard. He needs your love and praise.
a) Never yell at your child. This will make him feel bad about himself. Yelling is bad for your
child.

Do not make your child do something he cannot do. Encourage him and give him hope.

58

Manual
para
Padres, Cuidadores, y Voluntarios
para
enseñar a niños
de
nacimiento a 5 años de edad
con discapacidad intelectual
viviendo en comunidades rurales en la
República Dominicana

Carlos E. Madrid
University of Southern California

59

Paso 1: Mirar
Observar lo que los otros niños hacen. Mirar si su hijo hace las mismas cosas.

a) Mirar a los niños, 0-5 años, deben jugar con sus amigos. Anote lo que hacen.
-A 0-4 semanas los bebés: Tienen miedo a los ruidos fuertes. Lloran con hambre. Lloran
con sueño. Miran a la cara de su mamá. Mantienen la cabeza levantada cuando estén en su
estómago.
-A 4-8 semanas los bebés: Sonríen a las caras. Giran sus cabezas al escuchar voces.
Empiezan a chupar su pulgar.
-A 3-5 meses los bebés: Lloran por lo que quieren. Saben quien es extraño. Alcancen para
sus juguetes.
-A 6-9 meses los bebés: Se sientan sin ayuda. Se empujan con las manos para levantarse.
Gatean. Dicen, "Adiós" con las manos.
-A 12-18 meses los niños pequeños: Se levantan con su propia fuerza para pararse. Recogen
cosas con los dedos. Responden a su nombre. Saben lo que no deben hacer. Caminan y corren. Se
dicen que “No.” Comen por si mismo.
-A 2-5 años los niños: Utilizan por lo menos 40 palabras. Sostienen crayones con los
dedos. Saben la hora de dormir. Saben la hora de comer. Ayudan con las tareas sencillas de la casa.
b) ¿Su hijo tiene problemas al mostrar o decir lo que él quiere? ¿Se pone fácilmente molesto?
¿Juega con otros niños?

(Banegas)

60

PASO 2: Escuchar Sonidos
Para casi todos los niños la respuesta sería, "Sí."
a) ¿Mueve su hijo la cabeza cuando escuche su
nombre?

b) ¿Hace su hijo un sonido cuando le guste un juguete?

c) ¿Hace su hijo ruidos para mostrarle que tiene hambre?

d) ¿Hace su hija un ruido cuando vea un juguete con cual jugar?

Sí No
Sí

No
Sí

No
Sí

No
61

Paso 3: Habilidades Fáciles
Para casi todos los niños la respuesta sería, "Sí."
a) ¿Detiene su hijo cosas en las manos por 30-60 segundos?

b) ¿Aplaude su hijo mientras cante?

c) Gatea su hijo mientras juegue?

d) ¿Pone su hijo 4 a 6 cosas en una canasta para su madre?

e) ¿Camina su hijo diez pasos en una línea recta?

f) Puede su hijo abrir la puerta?

Sí

No
Sí

No
Sí

No
Sí

No
Sí

No
Sí

No
62

Paso 4: Habilidades Difíciles
Para casi todos los niños la respuesta sería, "Sí."

a) ¿Sube su hijo escaleras sin ayuda?

b) ¿Usa su hijo el dedo pulgar y otro dedo al recoger algo?

c) ¿Juege su hijo canica?

d) ¿Puede su hijo cortar el papel en figuras?

e) ¿Puede su hijo rodar una rueda para jugar?

Sí

No
Sí

No
Sí

No
Sí

No
Sí

No
63

Paso 5: Pregúntese a si mismo
¿Hace su hijo estas habilidades? Si no, hable con otros. Haga estas preguntas.

a) ¿Entiende los ruidos que hace su bebé?
b) ¿Puede su hijo hacer cosas que otros niños pueden hacer?
c) ¿Su niño ve a los demás?
d) ¿Su hijo duerme bien?
e) ¿Su hijo le escucha bien?
f) ¿Su niño juega con otros?
g) ¿Tiene su hijo amigos?

Si la mayoría de las respuestas son "No," su niño necesita ayuda. ¡Usted se lo puede dar!

64

Paso 6: Habilidades para Bebés
Tiempo tranquilo para el bebé

a) Sostenga a su bebé, pecho a pecho, piel a piel.
Haga esto por 60 minutos cada día.

b) Masajee a su bebé cada noche, antes de ir a acostarse.

Mamá necesita
descanso también
65

c) Su bebé puede dormir de espaldas con su madre o su padre.

d) Ayude a aprender a su bebé a volcar. Tírelo sobre la cama hasta que aprende a hacerlo.

e) Ayude a su bebé a sentarse. Ponga almohadas a su alrededor. Practique todos los días.

66

f) Ayude a su bebé a aprender a chupar. Ponga algo dulce en el dedo del bebé para chupar.
Coloque el dedo enfrente de su boca para que lo intente.

g) Ponga la silla del bebé cerca de la mesa. Corte su comida en pedazos pequeños. Él puede
comerla con las manos.

h) Ponga su bebé en el suelo para gatear. La familia puede jugar con él. Pueden pasar un juguete
a uno a otro jugando con él.

67

i) Compruebe el pañal del bebé cada 1 a 2 horas. Diga,
"Mojado," cuando esté mojado. Mueva su cabeza de
lado a lado. Cámbielo, sónriase y diga, "Seco." Déjelo
practicar en la silla del baño. Después que haya ido al
baño, sónriase y diga, "Seco." Sus hermanos pueden
ayudar.

j) Ayúdele a su hijo a caminar. La familia puede ayudar
también.

¡Tome
tiempo para
jugar!
68

k) Ponga a su hijo en el piso. Puede jugar con sus hermanos. Pueden jugar con juguetes. Ya al
terminar, todos guarden los juguetes en orden.

l) Durante el baño del bebé, ponga sus juguetes en el agua. Él puede jugar con ellos. Dígale,
"Recoge sus juguetes." Dígale que se los entregue a usted. Póngalos de nuevo en el agua. Él puede
agarrarlos de nuevo. Siga jugando con él así.

69

Paso 7: Habilidades para Niños 2-5 años
Su hijo puede aprender estas habilidades. Toda la familia puede ayudarle.

a) Enseñe a su hijo que le preste atención
cuando lo llame por su nombre. Ponga una silla
frente a frente. Ponga su hijo en una silla y
usted en la otra. Dígale "Daniel, mírame. Bien
Daniel, estás mirándome."

b) Enseñe a su hijo a venir a usted cuando lo llame por su nombre. Ponga
su mano en el hombro de su niño. Lo tire hacia usted. Diga, "Daniel, ven
acá." Muévase de él hacia atrás. Diga, "Daniel, ven acá." Muévase más
lejos. Diga, "Daniel, ven acá." Siga practicando con su hijo.

c) Mantenga la mano de su hijo. Él puede sostener el zapato. Trate de ayudarle mientras él
sostenga el zapato. Ayude a ponerle el pie en el zapato. Déjelo que ponga el pie en el zapato.
Agarre la mano y el zapato por menos tiempo. Haga esto hasta que lo haga por si mismo.

70

d) Enseñe a su hijo a llenar un cubo de agua. Él puede llevarlo adentro de la casa.

e) El día que se lave la ropa dígale a su hijo que le
ayude atraer la ropa sucia. Él puede traer agua en un
cubo, para que le ayude.

e) El día que se lave la ropa dígale a su hijo que le
ayude atraer la ropa sucia. Él puede traer agua en
un cubo, para que le ayude.

f) Su hijo puede traer la ropa a la casa, después que esté seca.

71

g) Enseñe a su hijo a barrer con una escoba. Él puede tirar el polvo en la basura.

h) Juegue con su hijo a las palmitas.

i) Su hija puede hacer comida. Ella puede buscarla y
traerla.

72

j) Su hijo puede aprender a correr. Puede correr
atrás de las gallinas. Puede correr con sus
amigos.

k) Su hija puede saltar. Ella puede saltar
sobre charcos de agua. Puede practicar
así.

73

l) Ayude a su hijo comer usando una cuchara. Póngase detrás de su niño. Ponga una cuchara en la
mano. Ponga la mano en el tazón. Levante la comida en la cuchara.

m) Su hijo puede recoger cosas pequeñas. Use habichuelas y arroz.

74

n) Ayude a su niño poner una camisa. Guie
las manos atravez de las mangas. Le ayude a
tirar hacia abajo.

o) Ayude a su hijo aprender a lavarse las manos. Use una barra de jabón del tamaño de las manos.
Frótele las manos juntas, para quitarse el jabón.

p) Enseñe a su hija a cepillarse los dientes.

q) Enseñe a su hijo a rebotar una pelota.

75

Paso 8: Tiempo Familiar
Su niño es parte de su familia. Él puede divertirse con toda la familia.
a) Puede divertirse una noche cada semana. Jugar juegos. Cantar canciónes. Bailar. Contar
historias. Irse a caminar. Haga lo que sea divertido. Hágalo con toda la familia.

.

b) Cenar juntos cada noche como
familia.
76

c) Conseguir una pequeña mecedora para su niño. Él puede balancearse con la familia, cuando se
vaya la luz.

d) Toda la familia puede ir a la iglesia
juntos.

77

Paso 9: Darle Esperanza
Para su niño algunas cosas son difíciles. El necesita su amor y sus felicitaciónes.
a) Nunca grita a su hijo. Esto le hará sentirse mal sobre si mismo. Gritando es malo para su hijo.

b) No haga que su hijo haga algo que no puede hacer. Hay que animarlo y darle esperanza.

78

References
Adams, M., Bell, L. A., & Griffin, P. (Eds.) (2007). Perspectives on the historical treatment of
people with disabilities. In Teaching for diversity and social justice (2
nd
ed.). New York,
NY: Routledge Publishing. Retrieved from
http://www.instructional1.calstatela.edu/dfrankl/curr/kin385/pdf/history-of-treatment-of-
the-disabled.pdf
American Occupational Therapy Association. (n. d.). Occupational therapy for young children:
Birth through 5 years of age. AOTA. Retrieved from http://www.aota.org/Occupational-
Therapy-for-young-children:-birth-through-5-years-of-age
American Occupational Therapy Association. (2016a). Evidence-based practice. AOTA.
Retrieved from http://www.aota.org/About-Occupational
Therapy/Professionals/EBP.aspx
American Occupational Therapy Association. (2016b). Occupational therapy's role in sleep.
AOTA. Retrieved from http://www.aota.org/about-occupational-
therapy/professionals/hw/sleep.aspx
American Physical Therapy Association. (n. d.). The role of physical therapy with infants,
toddlers and their families in early intervention. APTA. Retrieved from
https://pediatricapta.org/special-interest-groups/early-
intervention/pdfs/Role%20of%20PT%20in%20EI.pdf
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental
disorders (5
th
ed.). APA. Arlington, VA: American Psychiatric Association.
79

American Speech-Language-Hearing Association. (2008). Roles and responsibilities of speech
language-pathologists in early intervention. ASHA. doi: 10.1044/policy.PS2008-00291
American Speech-Language-Hearing Association. (2016). Speech and language disorders and
diseases. ASHA. Retrieved from http://www.asha.org/public/speech/disorders/
Banegas, Oscar. 2016. Print.
Barbosa, M. A., Balieiro, M. M., & Pettengill, M., A. (2012). Family-centered care in the
context of children with disabilities and their families: A reflective review. Texto &
Contexto-Enfermagem, 21 (1). Retrieved from
http:///www.scielo.br/scielo.php?pid=S01040-
7072012000100022&scipt=sci_arttext&ting=en
Bekker, G. (2011). Measuring the effectiveness of community based rehabilitation services in
children with developmental delays in the Dominican Republic. International Childcare.
Retrieved from
http://us.internationalchildcare.org/sites/internationalchildcare.org/files/atttachments/trud
y_article.pdf
Bergen, C. (2008). Effects of poverty on cognitive functioning: A hidden neurologic epidemic.
(Abstract). Neurology, 7(6), 447-451.
doi: http://dx.doi.org/10.1212/01.wnl.0000324420.03960.36
Blauw-Hospers, C. H., & Hadders-Algra, M. (2005, January 21). A systematic review of the
effects of early intervention on motor development. Developmental Medicine & Child
Neurology, 47, 421-432. doi:10.1017/S0012162205000824
80

Bright Futures. (2015). Pediatric symptom checklist. Bright Futures. Retrieved from
http://brightfutures.org/mentalhealth/pdf/professionals/ped_symptom_chklst.pdf
Brown, C. W. (1992). Summary of selected education reform bills: Implications for early
childhood. DEC Communicator, 18 (3), 4.
Center for Parent Information and Resources. (2014, May). IDEA-the individuals with
disabilities education act. Parent Center. Retrieved October 21, 2016 from
http://www.parentcenterhub.org/repository/idea/
Center for Disease Control and Prevention. (2016a, March 23). Fetal alcohol spectrum disorders.
CDC. Retrieved from cdc.gov/ncbddd/fasd/data/html
Center for Disease Control and Prevention. (2016b, April 23). CDC concludes zika causes
microcephaly and other birth defects. CDC. Retrieved from
http://www.cdc.gov/media/releases/2016/s0413-zika-microcephaly.html
Central Intelligence Agency. (2015). The world factbook 2014-2015. CIA. Retrieved from
http://www.cia.gov/library/publiccations/the-world-factbook/index.html
Chen, D. (1999). Essential elements in early intervention: visual impairment and multiple
disabilities. New York; NY: American Foundation for the Blind.
Child Psychologist. (2015). The Griffith mental development scales. Retrieved November 10,
2015 from http://www.childpsychologist.com.au/service/assessments/devlopmental-
assessments/the-griffith-mental-development-scales/
Cintas, H. W. (1995, January). Cross-cultural similarities and differences in development and the
impact of parental expectations on motor behavior [Abstract]. Pediatric Physical
81

Therapy, 7 (3), 103-111. Retrieved from
https://www.researchgate.net/publication/232171850_Cross
Cultural_Similarities_and_Differences_in_Development_and_the_Impact_of_Parental_E
xpectations_on_Motor_Behavior
Dominican Republic Lutheran Mission. (2016). Retrieved from
http://www.lcms.org/dominicanmission
Dominican Republic-Mustard Seed Communities. (2016). Children and adults with disabilities.
Retrieved from
http://www.mustardseed.com/site/PageServer?pagename=where_serve_dominican_repub
lic
DR1-Living. (2015). Retrieved from http://dr1.com/living/education/3.shtml
Education in Crisis: Dominican Republic. (n. d.). Retrieved from
https://www.educationincrisis.net/country-profiles/latin-america/item/514-dominican-
republic
Emerson, E. (2007). Poverty and people with intellectual disabilities [Abstract]. Developmental
Disabilities Research Reviews, 13(2), 107-113. Retrieved from
http://www.onlinelibrary.wiley.com/doi/10.1002/mrdd.20144/full
Evans, G. W., & Schamberg, M. A. (2009, February 24). Childhood poverty, chronic stress, &
adult working memory. Proceedings of the National Academy of Sciences in the United
States of America, 106(16), 6545-6549. Retrieved from
http://www.pnas.org/content/106/16/6545.full?sid%3D7362998f-ec72-425a-9f8d-
4e66ddbd7a61
82

Field, T. (1994). Infant massage. The journal of perinatal education, 3, 7-14. Retrieved from:
https://www6.miami.edu/touch-research/InfantMassage.html
Field, T., Grizzle, N., Scafidi, F., Abrams, S., Richardson, S., Kuhn, C., & Schanberg, S. (1996).
Massage therapy for infants of depressed mothers. Infant Behavior and Development, 19,
107-112. Retrieved from https://www6.miami.edu/touch/research/InfantMassage.html
Field, T., & Hernandez-Reif, M. (2001). Sleep problems in infants decrease following massage
therapy. Early Child Development and Care, 168, 95-104. Retrieved from
https://www6.miami.edu/touch/research/InfantMassage.html
Fraglala-Pinkham, M. (2008). Group aquatic aerobic exercise for children with disabilities.
Retrieved from http://onlinelibrary.wiley.com/doi/ 10.1111/j.1469-
8749.2008.03086.x/full
Friend, M. (2014). Special education: Contemporary perspectives for school professionals (4
th

ed.). New York, NY: Pearson Education, Inc.
Glascoe, F. P., Marks, K. P., Poon, J. K., & Macias, M. M. eds. (2013). Identifying and
addressing developmental and behavioral problems: A practical guide for medical and
non-medical professionals, trainees, researchers and advocates. Nolensville; TN:
PEDStest.com LLC Retrieved from
http://www.who.int/mental_health/evidence/atlas/profiles/en/
Guralnick, M. J. (2005). Early Intervention for children with intellectual disabilities: Current
knowledge and prospects. Journal of Applied Research in Intellectual Disabilities, 18,
313-324. doi : 10.1111/j.1468-3148.2005.00270.x
83

Hales, R. E., Yudofsky, S. C., & Roberts, L. W. (2014). Textbook of psychiatry (6
th
ed.).
Washington D. C.: American Psychiatry Publishing.
Healthy Children. (n. d.). What is early intervention? Retrieved from
https://www.healthychildren.org/Englishc/health-issuses/conditions/developmental
Hunt, N., & Marshall, K. (2005). Exceptional children and youth (4
th
ed.). Boston, MA:
Houghton Mifflin Company.
International Child Care. (2007). Opportunities for children with disabilities: Community-based
rehabilitation in the Dominican Republic. International Child Care. Retrieved from
http://www.us.internationalchildcare.org/dominican-republic
International Disability Rights Monitor. (2004). Regional report of the Americas. Chicago, IL:
International Disability Network. Retrieved from www.bbi.syr.edu/publications/blanck-
docs-2003-2004/IDRM_Americas_2004.pdf
Kaczmarek, L. A. (n. d.). A team approach: Supporting families of children with
disabilities in inclusive programs. NAEYC. Retrieved September 25, 2016 from
https://www.naeyc.org/files/yc/file/200601/KaczmarekBTJ.pdf
Lerner, J. W., Lowenthal, B., & Egan, R. (1998). Preschool children with special needs. Boston,
MA: Allyn and Bacon.
Lipina, S. J., Martelli, M. I., Vuelta, B. L., & Colombo, J. A. (2005). Performance on the a-not-b
task of Argentinian infants from unsatisfied and satisfied basic needs homes. Revista
Interamericana de Psicologaa, 39(1), 49-60. Available from
84

http://www.conicet.gov.ar/new_scp/detalle.php?keywords=Tato&id=24359&articulos=y
es
Lobo, M. A., Harbourne, R. T., Dusing, S. C., & McCoy, S. W. (2012). Grounding early
intervention: Physical therapy cannot just be about motor skills anymore. Journal of the
American Physical Therapy Association, 93(1), 94-103. doi : 10.2522/ptj.20120158
Mahoney, G., Boyce, G., Fewell, R. R., Spiker, D., & Wheeden, C. A. (1998). The relationship
of parent-child interaction to the effectiveness of early intervention services for at-risk
children and children with disabilities. Topics in Early Childhood Special Education,
18(1), 5-17. Retrieved from http://tec.sagepub.com/content/18/1/5.full.pdf+html
Manning, K. (2014). Dominican Republic revamps failing education system. Deutsche Welle.
Retrieved from http://www.dw.com/en/dominican-republic-revamps-failing-education-
system
Manno, C. J., Fox, C., Eicher, P. S., & Kerwin, M. E. (2005). Early oral-motor interventions for
pediatric feeding problems: What, when and how. Journal of Early and Intensive
Behavior Intervention, 2(3), 1415-159. Retrieved from
http://www.talktools.com/content/Early%20Oral-Motor%20Interventions.pdf
Marston, D. C. (2013). Neurobehavioral effects of poverty. American Psychological Association.
Retrieved from http://www.apa.org/pi/ses/resources/indicator/2013/01/poverty-behavior
McEntire, T. (n.d.). Why families should eat dinner together. Retrieved from
https://www.families.com/blog/why-families-should-eat-dinner-together
85

Memisevic, H., & Hadzic, S. (2013). Speech and language disorders in children with intellectual
disability in Bosnia and Herzegovina. Disability CBR ad Inclusive Development Journal,
24(2), 92-99. doi : 10.5463/DCID.v24i2.214
Metz, H. C. (1999). Dominican Republic & Haiti country studies. Federal Research Division,
Library of Congress. Retrieved from
http://www.archive.org/stream/dominicanrepublic00metz/dominicanrepubli00metz_djvu.
txt
Ministry of Education. (2007). Resource manual for teachers of students with exceptionalities.
Jamaican Ministry of Education. Retrieved from
https://www.mona.uwi.edu/cop/sites/default/files/resource/files/Special%20Ed%20Manu
al.pdf
Morris, K. (2008). Shedding light on the role of poverty in brain development. Lancet
Neurology, 7(8), 676-677. Retrieved from
http://www.thelancet.com/pdfs/jounals/laneur/PIIS1474-4422(08)70154-6.pdf
National Down Syndrome Society. (n. d.) Speech and language therapy for infants, toddlers, and
young children. Retrieved from http://www.ndss.org/Resources/Therapies-
Development/Speech-Language-Therapy/Speech-Language-Therapy-for-Infants-
Toddlers-Young-Children/
Noble, K. G., Houston, S. M., Kan, E., & Sowell, E. R. (2012). Neural correlates of
socioeconomic status in the developing human brain. Developmental Science, 15(4),
516-527. http://www.onlinelibrary.wiley.com/wo1/doi:10.1111/j.1467-
7687.2012.01147.x/full
86

Noble, K. G., Norman, M. F., & Farah, M. J. (2005). Neurocognitive correlates of
socioeconomic status in kindergarten children. Developmental Science, 8(1), 74-87.
Nordhov, S. M., Ronning, J. A., Dahl, L. B., Ulvund, S. E., Tunmby, J., & Kaaresen, P. I.
(2010). Early intervention improves cognitive outcomes for preterm infants: Randomized
controlled trial. American Academy of Pediatrics, 126(5). Retrieved from
http://www.pediatrics.aappublications.org/content/126/5/e1088
North, C. L. (2012). Improving childhood nutrition in rural Dominican Republic. Retrieved from
http://corescholar.libraries.wright.edu/cgi/viewcontent.cgi?article=1102&context=mph
NuRoo. (n. d.). The science behind the practice of skin-to-skin contact. NuRoo. Retrieved from
https://www.nuroobaby.com/skin-to-skin/
Nwokah, E., Hsu, H. C., & Gulker, H. (2013). The use of play materials in early intervention:
The dilemma of poverty. American Journal of Play, 5(2). Retrieved from
http://www.journalofplay.org/sites/www.journalofplay.org/files/pdf/5-2-article-the-use-
of-play-materials-in-early-intervention_0.pdf
Overview Education in the Dominican Republic. (2015). Justlanded. Retrieved from
http://www.justlanded.com/english/Dominican-Republic/Dominican-Republic-
Guide/Education/Overview
Partners for Youth with Disabilities, Inc. (n.d.). Best Practices. Retrieved September 23, 2016
from https://www.pyd.org/editor/images/Best-Practices-Guide-With-Graphics.pdf
Permanent Mission of the Dominican Republic to the United Nations. (n. d.). United Nations.
Retrieved from www.un.int/domrep/staff/ambassador-francisco-cortorreal
87

Peshawaria, R., & Venkatesan, S. (1992). Behavioural assessment scales for Indian children with
mental retardation. National Institute for the Mentally Retarded. Retrieved from
http://www.nimhindia.gov.in/Behavioural%20assesment%20scales%20for%20indian%2
0children-basic-mr.pdf
Quirky Kid Clinic. (2015). The Griffith Mental Development Scales. Quirky Kid Psychology
Clinic. Retrieved from
http://childpsychologist.com.au/service/assessments/developmental-assessments/the-
griffith-mental-development-scales/
Raising Children Network. (n. d.). Building good family relationships. Retrieved from
http://raisingchildren.net.au/articles/building_a_good_relationship_with_your_family.ht
ml
Ramey, C. T., & Ramey, S. L. (1998). Prevention of intellectual disabilities: Early interventions
to improve cognitive development. Preventive Medicine, 27(2), 224-232. Retrieved from
http://www.sciencedirect.com/science/article/pii/S009174359890279
Rauh, V. A., Nurcombe, B., Achenbach, T., & Howell, C. (1990, April). The mother-infant-
transaction program. The content and implications of an intervention for the mothers of
low-birth weight infants. [Abstract]. Clinics in Perinatology, 17(1), 31-45.
Reynolds, T., Zupanick, C. E., & Dombeck, M. (2013). Therapies for intellectual disabilities and
outdated/unproven treatments. Mental Health. Retrieved from
https://www.mentalhealth.net/articles/thereapies-for-intellectual-disabilities-and-
outdated-unproven-treatments
88

Rinaldi, T., Peroddin, C., & Morkham, H. (2008). Hyper-connectivity & hyper-plasticity in the
medial prefrontal cortex in the valproic acid animal model of autism. Frontiers in Neural
Circuitry, 2(4). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2580056/
Richdale, A. (2004). Sleep problems in children with an intellectual disability: Parental
perceptions of sleep problems and views of treatment effectiveness [Abstract]. Childcare
Health Development, 30(2), 139-150.
Sandall, S. (1997). The family service. In A.Widerstrom, B. Mowder, & S. Sandall (Eds.), Infant
development and risk: An introduction (2nd Ed.) (pp.155-172). Baltimore, MD: Paul H.
Brooks Publishing.
Sarlo, C. (1992). Poverty in Canada. Vancover; BC: Fraser Institute.
Schneider, E. F. (n. d.). Touch communication, the power of infant massage. Healthy Family.
Retrieved August 26, 2016 from http://www.healthyfamily.org/pub/article/2#
Shearer, D. E. & Shearer, M. S. (1976). The Portage Project. Retrieved from
https://www.mn.gov/mnddc/parallels2/pdf/70s/75/75-PPR-HEW.pdf
Shonkoff, J. P., & Meisels, S. J. (2000). Preface. In J. P. Shonkoff & S. J. Meisels (Eds.),
Handbook of early childhood intervention (2
nd
ed.) (pp. xvii-xviii). Cambridge, UK:
Cambridge University Press.
Smith, Romayne. (1993). Children with mental retardation. Bethesda, MD: Woodbine House.
Tasse, M. J. (2013, June 4). DSM-5: diagnostic criteria for intellectual disability. AAIDD.
Retrieved from https://www.aaidd.org/docs/default-source/annual-meeting/tasse-dsm5-
id-definition-5-23-2013-aaidd-2013.pdf?sfvrsn=0
89

The Arc. (2016). Causes and prevention of intellectual disability. Retrieved from
http://www.thearc.org/what-we-do/resources/factsheets/causes-and-prevention-of-
intellectual-disability
Tian-chan, L., Yu-zia, Z., Xiao-jing, H., & Yun, C. P. (2014). The effect of an early oral
stimulation program of preterm infants. International Journal of Nursing Sciences, 1(1),
42-47. doi : 10.1016/j.ijnss.2014.02.010 or
http://www.sciencedirect.com/science/article/pii/S235201321400012X
United Methodist Committee on Relief. (2015). Services for children with disabilities in the
Dominican Republic. Retrieved from http://www.umcor.org/Search-for-
Projects/Projects/410215
United Nations. (n. d.). Founding member states. UNICEF. Retrieved from
www.un.org/depts/dhl/unms/founders.shtml
United Nations Children’s Fund. (n. d.). Dominican Republic boys and girls of school-going age.
UNICEF. Retrieved from
http://www.dnsrsearch.com/index.php?origURL=http%3A//www.unicf.org/republicadom
inicana/english/children_9405.htm&r=&bc
United Nations Children’s Fund (2012). Dominican Republic: Country programme document
2012-2016. UNICEF. Retrieved from
www.unicef.org/republicadominicana/Dominican_Republic_final_approved_2
United Nations Committee on Economic, Social, and Cultural Rights. (2009). Implementation of
the international covenant on economic, social and cultural rights: 3
rd
periodic reports
submitted by states parties under articles 16 and 17 of the covenant: Dominican Republic.
90

CESCR. Refworld. Retrieved from
http://www.refworld.org/topic,50ffbce51b1,50ffbce51ea,52d793574,0,,,DOM.html
United Nations Office of the High Commissioner for Human Rights. (2002). Convention on the
rights of the child. OHCHR. Retrieved from
http://www.ohchr.org/en/professionalinterest/pages/crc.aspx
United Nations Office of the High Commissioner for Human Rights. (2014). Convention on the
rights of persons with disabilities training guide no. 19. OHCHR. New York, NY: United
Nations Publication. Retrieved from
http://www.ohchr.org/Documents/Publications/CRPD_TrainingGuide_PTS19_EN%20A
ccessible.pdf
United Nations Human Rights Office of the High Commissioner. (2015). Committee on the
rights of persons with disabilities considers report of the Dominican Republic. OHCHR.
Retrieved from
http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=15806&LangI
D=E
Valvano, J., & Rapport, M. J. (2006, October-December). Activity-focused motor interventions
for infants and young children with neurological conditions. Infants and Young Children,
19(4), 292-307. Philadelphia, PA: Lippincott Williams & Wilkins, Inc. Retrieved from
https://depts.washington.edu/isei/iyc/valvano_19.4.pdf
Ventura, C. A. (2014, June). International law, mental health, and human rights. Human Rights.
Retrieved from http://humanrights.nd.edu/assets/134859/venturamentalhealth.pdf
91

Volunteer Training Manual. (n. d.). Rideability. Retrieved from http://www.rideability.org/wp-
content/uploads/2013/04/Volunteer-Training-Manual.pdf
Washington University in St. Lewis. (2012). Early intervention may help preemies catch up. doi :
10.1016/j.jpeds.2012.08.011
World Bank Indicators. (2016). Trading economics. Retrieved from
http://www.tradingeconomics.com/dominican-republic/rural-population-percent-of-total-
population-wb-data-html
World Health Organization. (2011). Mental health atlas country profiles. Retrieved from
http://www.who.int/mental_health/evidence/atlas/profiles/en/
World Health Organization. (2008). Report of the assessment of the mental health systems in the
Dominican Republic using the WHO assessment instrument for mental health systems.
Retrieved from
http://www.who.int/mental_health/dominican_republic_who_aims_eng.pdf
Zeldin, A. S. (2016). Intellectual disability treatment and management. Emedicine. Retrieved
from http://emedicine.medscape.com/article/1180709-treatment

Abstract (if available)

Abstract Children with intellectual disability reside in every country and nation and there is an indisputable recognition that parents and caregivers are among the critical resources available to children with intellectual disability. Increasingly in western nations, parents and caregivers are involved in intervention at home to reinforce what professionals do. Historically, western nations have been at the forefront of recognizing the potential of children with intellectual disability and assuring their full inclusion and participation in community life. Similarly, the increasingly critical and active role of the parents and caregivers in supporting their child’s development has led to extensive development of parent training materials. The purpose of this project is to develop a culturally competent manual for parents, caregivers, and volunteers that provides hope and gives insight into how to best assist and promote the early development of children (birth to 5 years) with intellectual disability living in rural communities of the Dominican Republic. The manual was written for the Dominican Republic’s rural communities and their unique needs, specifically because most parent/training manuals for children with intellectual disability are generally translated directly from English to the culture utilizing the manual, resulting in manuals that are not culturally competent, especially for native populations.

Linked assets

University of Southern California Dissertations and Theses

Conceptually similar

PDF

The role of public policy in the decisions of parents and caregivers: an examination of work, fertility, and informal caregiving

PDF

Older adult community service worker program for Riverside County: community-based solutions for social service delivery

PDF

Where there is discretion, should law enforcement officers at the local level be involved in enforcing federal immigration law? a study for consideration

PDF

A social skills curriculum intended to increase the employment success of secondary transition aged students with moderate to severe intellectual disabilities

PDF

Supporting a high value maternity system of care: prioritizing resilience of and relationships with mothers to improve maternal and child health

PDF

Jobs, not jail: Homeboy Industries, a radical approach to redirecting adolescents away from the criminal justice system

Asset Metadata

Creator Madrid, Carlos E. (author)

Core Title Research to develop a manual for parents, caregivers, and volunteers to teach children from birth to five years of age with intellectual disability living in rural communities in the Dominican Re...

School School of Policy, Planning and Development

Degree Doctor of Policy, Planning & Development

Degree Program Policy, Planning, and Development

Publication Date 02/16/2017

Defense Date 01/20/2017

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag Dominican Republic,intellectual disability,OAI-PMH Harvest,parent manual,Rural communities

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Lewis, LaVonna B. (committee chair), Nichol, Michael B. (committee member), Wheeler, Barbara Y. (committee member)

Creator Email cmadrid@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c40-339887

Unique identifier UC11258138

Identifier etd-MadridCarl-5077.pdf (filename),usctheses-c40-339887 (legacy record id)

Legacy Identifier etd-MadridCarl-5077.pdf

Dmrecord 339887

Document Type Dissertation

Rights Madrid, Carlos E.

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the a...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus MC 2810, 3434 South Grand Avenue, 2nd Floor, Los Angeles, California 90089-2810, USA