RCI research on Transition to adulthood (Final report)

Young Persons with Disabilities in Transition to
Adulthood: Understanding the pathway through
experiences and influencing factors.

RESEARCH CENTER FOR INCLUSION
2019

Acknowledgement:

This research becomes a reality with the kind support and help of many individuals.
Research Center for Inclusion (RCI) would like to extend our gratitude and appreciation
to all of them.

Foremost, RCI would like to gratefully acknowledge the active participation of YPWD
and their families, school teachers and local staff who are willing to share with us their
life stories and experiences. Special thanks to our Partner Organizations namely Office of
Genetic Counseling & Disable Children; Nguyet Bieu Social Protection Home of Hope;
Quang Tri Charity Association and Children of Viet Nam who dedicated their time and
effort to facilitate the research with us.

We are also very grateful for the sponsor of Liliane Foundation who fund for this
research. Very special thanks to Ms. Nguyen Thanh Thuy – Director of RCI who warmly
encouraged us to pursue the research idea and offered helpful support that enabled the
accomplishment of this research.
We would like to thank research team leader – Ms. Nguyen Thi Minh Chau for her
passion and unflagging effort throughout the whole research progress. Thanks to Mr.
Pham Tran Thang Long for his valuable advices to the construction of this research. A
special thanks to Ms. Nguyen Bao Ngoc for her continuous assistance and critical
analysis during the writing process. Their expertise in the field of child protection and
disability, community development and education elevates the successful completion of
the research.

Hopefully this research will provide useful information and motivate the readers to
promote equality and inclusion for individuals with disability.

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CONTENTS

ABBREVIATIONS..................................................................................................................... vi
EXECUTIVE SUMMARY......................................................................................................... vii
PART I. INTRODUCTION OF THE RESEARCH PROJECT..................................................... 1
1.1 Research Rationale................................................................................................................ 1
1.2 Research Objectives and Questions ........................................................................................ 2
1.3 Research Methodology........................................................................................................... 3
1.4 Research Design .................................................................................................................... 3
1.5 Data analysis ......................................................................................................................... 5
1.6 Research Ethics ..................................................................................................................... 5
1.7 Research Limit ...................................................................................................................... 6
1.8. Theoretical Reviews.............................................................................................................. 6

1.8.1 Related Concepts in Transition to Adulthood ...................................................................... 7
1.8.2 Ecological Theory ............................................................................................................ 8
PART II. SITUATION OF YOUNG PERSONS WITH DISABILITIES IN VIET NAM..............10
2.1 Overview of Disability Situation in Viet Nam.........................................................................10
2.2 Primary and Alternative Care for Children with Disabilities..................................................12
2.3 Available Healthcare and Rehabilitation Services for Young Persons With Disabilities ...........12
2.4 The Participation of Young Persons With Disabilities in Education ........................................13
2.5 Employment Opportunities for Young Persons with Disabilities.............................................15
2.6 Social Inclusion and Empowerment of Young Persons with Disabilities ..................................16
PART III. EXPERIENCES OF YOUNG PERSONS WITH DISABILITIES IN TRANSITION TO
ADULTHOOD ..........................................................................................................................18
3.1 Introduction .........................................................................................................................18
3.2 Daily Life Activities ..............................................................................................................18
3.3 Access to Education and Schooling Experiences.....................................................................20
3.4 Personal and Reproductive Healthcare..................................................................................22
3.5 Social Participation ..............................................................................................................26
3.6 Conclusion ...........................................................................................................................32

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PART IV. INFLUENCING FACTORS DURING TRANSITION FROM CHILDHOOD TO
ADULTHOOD WITH DISABILITIES.......................................................................................33
4.1 Introduction .........................................................................................................................33
4.2 Individual Factors ................................................................................................................33
4.3 Family’s Concerns and Preparation ......................................................................................38
4.4 Available Support and Interventions .....................................................................................41
4.5 Resilience of Young People with Disabilities and Their Families .............................................43
4.6 Conclusion ...........................................................................................................................46
PART V. CONCLUSION AND RECOMMENDATIONS............................................................47
5.1 Conclusion ...........................................................................................................................47
5.2 Recommendations ................................................................................................................49

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LIST OF TABLES
Table 1. Statistic of the samples ................................................................................ 4

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ABBREVIATIONS

ASD Autism spectrum disorder
GDP Gross Domestic Product
GSO General Statistic Office
ILO International Labour Organization
ISEE Institute for Studies of Society, Economy and Environment
IT Information Technology
MOH Ministry of Health
MOLISA Ministry of Labour, Invalid
RCI Research Center for Inclusion
SDG Sustainable Development Goals
UN The United Nations
UNCRC The United Convention on the Rights of the Child
UNESCO United Nations Educational, Scientific and Cultural Organization
UNFPA United Nations Population Fund
UNICEF United Nations International Children’s Emergency Fund
VABED Viet Nam Association of Business Enterprise of Persons with
Disabilities
YPWD Young Persons with Disabilities

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EXECUTIVE SUMMARY

Young persons with disabilities, like any young people, face a number of stage of life
including the transition from childhood to adulthood that encompass across the age 15-24.
This particular period is a major developmental challenge with numerous changes in life
regarding education, employment, independent living, social/community life.
Nevertheless, as young persons with disabilities often face more discrimination and severe
social, economic, and civic disparities than their non-disabled peers, it is even more
difficult for them to go through the transition to adulthood. In order to provide effective
support for young persons with disabilities, Research Center for Inclusion (RCI) found an
urgent need to have knowledge and understanding about the transition from childhood to
adulthood of young persons with disabilities.
Thus, in 2019, Research Center for Inclusion conducted a qualitative research to explore
the transition period from childhood to adulthood of children with disabilities in Viet Nam
for the sake of having understanding on their daily experiences, the influencing factors to
the transition and how young persons with disabilities and their families are prepared to
enter adulthood. The research gathered evidences from a range of stakeholders including
the young persons with disabilities, caregivers and parents of young persons with
disabilities, school teachers and RCI funded project employers by means of in-depth
interviews and focus groups discussion. The research was design to ensure it was
conducted in a professional and ethical manner that left no harm to the participants. Data
collection was conducted in the four project sites of RCI in Hue, Quang Tri, Da Nang and
Quang Nam in collaboration with RCI’s Partner Organizations.
The overarching finding throughout the research is that many young persons with
disabilities have limited and poor preparation for entering adulthood. There is a lack of
knowledge and understanding of disability-related needs of young people by parents,
educators and community members. And this is one of the key influencing factors that
hinder the transition process. The prominent challenges during the transitioning arise from
many factors such as health and self-care, education, employment, social relationship,

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leisure roles, which may affect young persons with disabilities’ independence, self-esteem,
integrity and quality of life. young persons with disabilities often spend most of their time
at home and at school. However, there is hesitation from parents about children’s
participation in social activities at school and at the community as they are afraid that their
children may get bullied, hurt or have no ability to participation. Thus, young persons with
disabilities often lack of transition-related skills such as self-determination skills,
social/relationship skills, work-readiness skills, mobility, communication skills,
community skills, daily-living skills. There is limited service available and accessible to
this particular age group whereas families have a strong need to receive support and prepare
young persons with disabilities for adulthood and future life. For the cases that young
persons with disabilities receive support from developmental projects, their participation
in the project as key actors is quite vague, which may affect the sustainability of the
interventions. Most of parents shared that they are raising their children by their parental
instinct without knowing technical skills to take care of children with disabilities. Thus,
when children with disabilities come to the age of puberty, they find themselves perplexed
in giving instruction for their children in terms of reproductive health care issues. In
addition to that, parents have ambiguity towards the future life of their children, regarding
education, employment and marriage.
Overall, the research findings suggested a number of recommendations, which focus on
intervention programs concerning capacity building on transitional-related skills, adult
education, youth empowerment, family support and system linkages. young persons with
disabilities, parents, teachers and those who directly support young persons with
disabilities need to be informed and aware of the transition period. Therefore, capacity
building for these groups will be of great importance to enhance their knowledge and skills
about the transitioning. Furthermore, the intervention programs need to be designed base
on individual child’s needs, taking into account the child’s strength, preferences and
interests instead of short-term and acute support. Also, the supporting system and
mechanism should be augmented by identify the gaps in the systems and provide linkages

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between different services and multiple agencies. These elements are essential to enable
young persons with disabilities to enter adulthood more confidently.
In the coming years, RCI will bring the research findings into practice by developing
strategic programs together with Partner Organizations in Viet Nam to address the
challenges of young persons with disabilities during the transition to adulthood.

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PART I. INTRODUCTION OF THE RESEARCH PROJECT

1.1 Research Rationale
Young persons with disabilities (YPWD) commonly face more discrimination and severe
social, economic, and civic disparities than their non-disabled peers. For many YPWD,
exclusion, isolation, and abuse, as well as lack of educational and economic opportunities
are commonplace. As a group, YPWD are amongst the most marginalized and poorest
youth in the world. Their basic rights are not well met and societal acceptance is often out
of reach. Persons with Disabilities also have poorer health outcomes, lower education
achievements, less economic participation and higher rates of poverty than non-disable
people. One of the reasons for this disparity is that Persons with Disabilities experience
barriers to accessing services. These difficulties are exacerbated in less advantaged
communities. The large majority of Persons with Disabilities live in developing countries,
often under poor conditions, lacking the basic support and services that would improve
their lives considerably.
The transition to adulthood is a crucial phase in the life of any individual and it proves
difficult, uncertain and stressful for a large share of the general population of youth. As
such, it is an especially challenging time for young people and their families who have
added barriers like disabilities. No stage in life, other than perhaps infancy, experiences
such dynamic and complex changes on the personal, social, emotional, neuroanatomical,
and developmental level (Wood et al, 2017). Youth with disabilities also face psychosocial
developmental tasks associated with the transition to adulthood, such as achieving
psychological maturity, the establishment of a sense of identity, increasing independence
and personal autonomy, and changing parent-youth relationship.
Overall, the transition to adulthood period for youth with disabilities presents unique
complexities and significant challenges that are important for researchers to work on
understanding and communicating to those involved. Research on the transition to
adulthood of youth with disabilities is often framed within the context of educational
transition services while it mainly focuses on improving the academic and functional

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achievement of the youth with disabilities to facilitate the youth’s movement from school
to post-school activities, including post-secondary education, vocational training,
integrated employment, continuing and adult education, adult services, independent living
or community participation.
In the context of Viet Nam, persons with disabilities often face numerous challenges in
having access to rehabilitation, education, employment and social inclusion. A vast
majority of persons with disabilities in Viet Nam, or 75 per cent, live in rural areas and
attend school at rates far below those of non-disabled persons. In the world of work, few
persons with disabilities have stable jobs and regular incomes. Many remain outside of
formal employment systems. Persons with disabilities also have low levels of education
and training. Thus, they hardly cover the daily expenses. Approximately 80 per cent of
disabled persons in urban areas and 70 per cent in rural areas depend on their families,
relatives and social allowances (ILO, 2013). The pictures about the situation of persons
with disabilities in Viet Nam is quite blur. Very little research exists on YPWD and their
daily challenges, especially during the transitioning period, which is considered as a very
important phase of one’s life cycle. Therefore, Research Center for Inclusion (RCI) aimed
to document the experiences and needs of YPWD during the age 16 – 25 years old by
exploring the transitioning experience and factors that influenced it. As transition is a key
concept for understanding development, thus, having evidences about transition will enable
researchers, community workers, policy makers and who work directly with YPWD to
understand the possible developmental trajectories, barriers as well as opportunities to
support this specific group accordingly.
1.2 Research Objectives and Questions
This study aimed to explore the experiences of YPWD during the transition from childhood
to adulthood together with the factors that influence transition process and how YPWD and
their families are prepared to enter adulthood.
To achieve these aims, the research has raised 2 questions:

1. What are the experiences of YPWD in Viet Nam during the transition from
childhood to adulthood?

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2. What are the factors influencing transition process of YPWD in Viet Nam?
1.3 Research Methodology
In this research, we adopted qualitative method for the following reasons. Firstly,
qualitative method is especially appropriate to the study of vulnerable people as it focus on
the viewpoints of marginalized groups, such as persons with disabilities. Therefore, using
qualitative method will help understand the meaning, interpretation and subjective
experiences of YPWD, the main target of this research. Secondly and more importantly,
qualitative research method allows researcher to be able to hear the voices of those who
are ‘silenced and marginalized by the dominant social order’ by enabling people to their
life stories with focus on the process and the significances in their stories.
1.4 Research Design
Research site
The research was implemented in the 3 project sites of RCI including Hue, Quang Tri and
Quang Nam which located in the central of Viet Nam. These selected areas have high
number of persons with disabilities among other regions in Viet Nam due to the severe
consequences of war and natural disaster. At these areas, RCI is now working with the 4
Partner Organizations namely:

- Office of Genetic Counseling & Disable Children – Hue city
- Nguyet Bieu Social Protection Home of Hope – Hue city
- Quang Tri Charity Association – Quang Tri province
- Children of Viet Nam – Da Nang & Quang Nam
Sampling and Recruitment
In this research, we used purposive sampling as it is a useful technique for the identification
and selection of cases that have rich experiences about a phenomenon of interests
(Cresswell, 2011). Thus, in order to gain a comprehensive understanding about the
transition from childhood to adulthood, we decided to collect information from four main
target groups including: YPWD, caregivers, teachers and project staff who respectively
represent people from micro and mezzo level. Recruitment began with YPWD who are
beneficiaries of RCI’s funded projects at local level. We contacted with the Partner

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Organizations to invite YPWD in the age group 16 – 25 that can represent for 6 types of
disabilities according to the Law on Persons with Disabilities (The National Assembly,
2010). The majority of participants are young people with intellectual disability and
physical disability. Teachers and parents were also recruited through the Partner
Organizations. Project staff were recruited based on the criteria that they must have
experiences working on the disability project funded by RCI and have long-term
experiences on supporting children with disability at community. Accordingly, table 1
shows the result of participant recruitment.

Table 1. Statistic of the samples

Location Young persons with Parents Teachers Project
staff
disabilities 9 2 2
11 2 1
Hue 8 13 1 1

Quang Tri 8

Da Nang & 9

Quang Nam

Total 25 33 5 4
(Source: RCI research team, 2019)

Interview guide
The semi-structured interview guide was developed by RCI research team with various
guiding questions about the experiences of YPWD based on the concepts of childhood,
transition and adulthood. By using semi-structured methodology, we were able to have
natural conversation with YPWD which allowed the data collectors to capture important
information for the research. We conducted semi-structured interviews with average time
from 30-60 minutes for each case.
Data collection
We emphasized the participatory approach during data collection process by strictly
following the procedures of informing the participants about the purposes of the research.
Consent form was given for each participant at the beginning of the interview. Participants

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could choose who to work with for interviewing from the research team when the cases
allowed. For example, when there were 3 data collectors visited an institution together, we
invited the selected participants to choose who they want to have an interview with. In so
doing, we gave participants choices to feel more confident and respected.
The data collection was implemented in July and August 2019. All in-depth interviews
were conducted at either the participants’ homes or the institution they currently stayed
with. In-depth interviews with teachers and project staff were conducted at school or the
partner organizations’ office. Three focus groups were held at community which last
approximately about 1.5 – 2 hours each.
1.5 Data analysis
Qualitative data from the in-depth interviews and the focus group discussions were
transcribed into text, coded and categorized into themes ready for the analysis. Thematic
analyses of narratives from data of interviews and focus group discussion with young
people and caregivers was undertaken. The research has employed Ecological Theory to
analyze the influencing factors to the transition from macro to mezzo and micro levels.
During the analysis, original words of the participants have been used to report the findings
of this research so as to enhance trustworthiness of qualitative data.
1.6 Research Ethics
- Anonymity and Confidentiality: All the names and identity of the participants involved

in this research will be coded to avoid identical recognition. The information of
participants will be secured by storing files and transcriptions in locked folders that
only the research team have access to.
- Sensitive information: Disability sensitivity was taken into consideration in order to
create safe, friendly and comfortable atmosphere throughout all the interviews and the
focus group discussions. Researchers and facilitators introduced clearly about the aims
of the research and its scope so that the participants have clear understanding about
their involvement. During the interviews, all questions must be addressed in an ethical
manner to avoid emotional risks/harms to the participants. The research team also set
up a protocol designed to gather sensitive information. Particularly, the data collectors

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had profiles of participants prior to the interviews to gain the knowledge of their
disability and cause of disability without raising questions. For sensitive questions, such
as asking about puberty, the data collectors made questions for caregivers, local staff in
a respectful manner.
- Validity: The research plan is thoroughly examined by the research team who have
experiences in doing research in the fields of childhood study, disability, community
development and education. Prior to each field trip, a meeting between researchers,
interviewees and management board had been organized to go through the research
plan and to have clear understanding of the procedure.
1.7 Research Limit
This research only considered YPWD in the project sites of RCI and is not therefore
representative for the entire population of YPWD in Viet Nam. Therefore, there was a lack
of diversity on a number of sociodemographic variables. The scope of this research is
limited in discussion relating to disabilities, and thus is inapplicable to provide any
comparison with cases without disability condition.
1.8. Theoretical Reviews
In this research, we employed several key concepts about childhood, disability and
transition in the framework of ecology theory to inform research methodology as well as
to analyze the research findings

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1.8.1 Related Concepts in Transition to Adulthood
Childhood
In terms of age range, there is no single acceptance to decide who a child is. According to
the Law on Children of Viet Nam (The National Assembly, 2016), a child is a person below
the age of sixteen. This definition of the child differs from the United Convention on the
Rights of the Child (UNCRC), which defined that children are under the age of 18. This
research, therefore, applies the Viet Nam’s classification.
Besides, children are, in most case, less well-developed physically than adults. They tend
to be shorter, to weigh less, and in the case of younger children, have yet to develop sexual
characteristics associated with their gender. In comparison with adults, children are less
well-developed mentally in terms of their intellectual abilities, cognitive skills, the breadth
and depth of their knowledge, and their ability to understand and to reason (James and
James, 2008). Therefore, children are subject to be under the special protection of adult
person and be not (fully) responsible for their well-being (Bagatitini, 2014).
Having all of those consideration, this research reaches to the concept of childhood as an
early stage in the life of a person that should lead to autonomy and full cognitive abilities
as an adult person.
Adulthood
Adulthood is a socially constructed phenomenon that take its meaning and content from
culture and socioeconomic conditions in society in time and space. The status of adulthood
is endowed with rights and obligation due to a fully participating, responsible member of
society.
Transition
Transition is a term that indicates a process from one stage to another. The transition from
childhood to adulthood is an important stage of an individual’s life course that involves
major development that are connected to the family background such as leaving education,
becoming gainfully occupied and financially independence. Such transition may also
enhance the personal development of young adults in instance when these engage in full-
time employment, romantic relationship, parenthood and other adult’s activities. Thus,

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adulthood seems to be a time where individuals develop their personalities and identity
towards maturity. Similarly, Patton and Clark indicated 3 major domains of transition cover
working, learning and living with 11 sub-domains: Career choice and Planning –
Employment Knowledge and Skills; Further Education/Training – Functional
Communication – Self-Determination; Independent Living – Personal Money
Management – Community Involvement and Usage – Leisure Activities – Health –
Interpersonal Relationship. These authors emphasized that with “the knowledge, skills and
support to deal effectively with the various demands of adulthood, the it is likely that their
lives will be more enriched and satisfying” (Patton & Clark, 2014, p.1)
The process of transition to adulthood encompass people aged 18 to 25 years old (Young
et al., 2011). The interchangeable terms of youth and young people are used by the United
Nations (UN) when referring to a similar age-range, from 15 to 24 years old (United
Nations, 2009). According to the UN, youth is the most used terms to describe the transition
from dependence in childhood to independence in adulthood. It is also used to refer to
people who are finishing compulsory education and seeking for their first job (United
Nations, 2009). Together with the aforementioned definition of a child, this research takes
into account the age range of 16 to 25 years old for mentioning the perspective of a
transition to adulthood.
By adopting various concepts on transition, this research takes a particular attention
towards the experiences of YPWD in transitioning to adulthood and finding the influencing
factors on this transition by analyzing primary domains include health, education,
employment, social/community life.

1.8.2 Ecological Theory
Bronfenbrenner (1979) proposed the ecological theory to explain how children function in
a family system and in the broader context of the world. Especially, Bronfenbrenner
developed a model of “contexts” by that children are influenced with the child in the center
of different settings (Grant and Ray, 2010). The Ecological theory indicated that children
grow up in different settings have access to different, and similar, interpersonal, economic,

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social and cultural resources, and experience the broader social-cultural world in different,
and similar, ways (Meadow, 2009).
Bronfenbrener’s ecological model emphasizes the need to examine several levels of social
systems in order to fully understand human development. Therefore, Ecological Theory is
a comprehensive approach for the study of transition, especially in the context of transition
from childhood to adulthood. We employ Ecological Theory to recognize children’s
immediate experiences in context, and also to capture patterns of interaction between
individuals, groups and institutions as they unfold over time. They have the benefit of
capturing how, for instance, transition on the macro level impact on children via parental
unemployment with consequences for the household microsystem with which children
directly engage.
The Ecological model in Bronfenbrener’s ecological theory consists 4 structures: micro –
meso –exo and macrosystem (Bronfenbrener, 1979). And the transition from childhood to
adulthood can have multiple influencing factors rising from the above systems. However,
we focus on the three following structures as mandate to analyze our data:

A micro system – is a pattern of activities, roles, and interpersonal relation
experienced by the developing person in a given setting with particular physical and
material characteristic; (such as individuals cognitive, personality, emotional
development…)
A mesosystem – comprises the interrelation among two or more setting in which the
developing person actively participates (such as, for a child, the relations among
home, school, and neighborhood peer group; for an adult, among family, work, and
social life; parent-child relationship, family environment);
The macrosystem – refers to consistencies, in the form and content of lower-order
systems (micro-, meso- and exo-) that exist, or could exist, at the level of the
subculture or the culture as a whole, along with any belief systems or ideology
underlying such consistencies (such as historical, cultures, societal and political
influences)

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PART II. SITUATION OF YOUNG PERSONS WITH DISABILITIES
IN VIET NAM

2.1 Overview of Disability Situation in Viet Nam
The National Survey on Persons with Disabilities in Viet Nam (2019) found that 6,2 million
people live with disabilities, which equal to almost 7 per cent of the whole population. The
vast majority – 75 per cent of persons with disabilities live in rural areas. Person with
disabilities are recognized as one of the most vulnerable members of society, facing
significant challenges and barriers in their daily lives. Therefore, they are among several
social beneficiary groups eligible for state social protection, including a monthly cash
transfer, non-contributory health insurance and education assistance.
The Vietnamese government has promulgated many legal documents to protect the rights
of persons with disabilities. Specifically, the government has passed the Law on Persons
with Disabilities (The National Assembly, 2010) which outlines the right to state support
across a range of sectors including welfare, health care and rehabilitation, education,
vocational training, employment, transportation, sports and entertainment. Some of the
important legal documents include:

- Decree 28/2012/ND-CP dated April 10th 2012 of the Government guiding the
implementation of some articles of the Law on Persons with Disabilities;

- Decree 136/2013/ND-CP dated October 21st 2013 of the Government regulating
social assistance policies for social protection recipients;

- Prime Minister’s Decision No. 1019/QD-TTg dated August 5th 2012 on the
approval of the National Action Plan to support persons with disabilities during
2012-2020;

- Prime Minister’s Decision No. 1100/QD-TTg dated June 21st 2016 on approval of
the National Plan on Implementation of the United Nations Convention on the
Rights of Persons with Disabilities.

According to the Law on Persons with Disabilities promulgated by the National Assembly
of Viet Nam (2010) – Article 4, there are 6 forms of disability include:

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1. Physical disability
2. Sensory disability
3. Visual disability
4. Mental and psychiatric disability
5. Intellectual disability
6. Other disabilities
One of the most important changes regarding the disability categories is the adjustment in
the National Law on Persons with Disabilities, which represents the country's first
comprehensive national law providing a guarantee to the rights of persons with disabilities.
In the past, autism spectrum disorder (ASD) was not categorized by law as a form of
disability, leaving persons with ASD with many challenges to have access to quality
education or receive disability allowance from the government. At present, the amendment
in the Circular 02/2019/TT-BLDTBXH (which replaced the Joint Circular 37/2012/TTLT-
BLDTBXH-BYT-BGDDT) indicates that ASD is categorized as a form in other
disabilities.
Regarding the degree of disability, Persons with disabilities are classified in three degrees
and will receive disability allowance based on their forms:
1. Persons with exceptional serious disabilities
2. Persons with serious disabilities
3. Persons with mild disabilities
With regards to the assessment of eligibility for disability-targeted social protection, the
study from Leonard Cheshire Disability (2017) found that current measurement in Viet
Nam contains many impairment-based questions while most of the local evaluators do not
have any formal medical training, which create difficulties in disability identification and
severity classification. Furthermore, the determination of mental and intellectual
disabilities, ‘other’ disabilities, and children with disabilities are most troublesome.
Under the national disability law, persons with disabilities may receive a range of benefits
from state government in accordance with their disability severity. Persons with disabilities
who wish to apply for benefits need to apply for a disability ID card at local commune

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people’s committee. Once received the disability certificate, the persons with disabilities
can apply for social allowances and other benefits. Although the system is available, there
are shortcomings in targeting of social protection for persons with disabilities (Leonard
Cheshire Disability, 2017). However, the Disability Allowance is only provided for people
who are officially identified with severe and extremely severe disabilities. Furthermore,
the amount of disability allowance is not sufficient to deliver a minimum standard of living
for targeted beneficiaries. This fact suggested that the investment for social assistance in
Vietnam is still limited. The cash transferred from MOLISA for persons with disabilities
accounts for only 0,09% of GDP in 2013, which is far below than that of the number of
other middle-income countries (Bank et al, 2018).
Viet Nam has ratified the United Convention on the Rights of Persons with Disabilities in
2014. However, many persons with disabilities still lack understandings of their
entitlements and rights, which also one of the factors contributed to the limited
implementation and realization of persons with disabilities’ rights.
2.2 Primary and Alternative Care for Children with Disabilities
In the 2016 Law on Children – Article 4, alternative care means the care and nurture given
by an organization, a family or an individual to an orphan, a child who is disallowed or
unable to live with his/her biological parents, or a child who is affected by a natural disaster,
a catastrophe or armed conflicts in order to ensure his/her safety and best interest. Children
with disabilities are usually institutionalized because of families’ limited resources and
abilities to provide access to food, education or medical care, or when children with
disabilities are abandoned and have no legal guardians. When a child is placed in an
institution, there is no periodic review or needs assessment as to the placement of the child
in the institution. Mostly, orphan children with severe disabilities is likely to remain in the
institution for quite a long time or even a lifetime.
2.3 Available Healthcare and Rehabilitation Services for Young Persons With
Disabilities
In the Law on Persons with Disabilities (The National Assembly, 2010), Article 4 specified
that persons with disabilities are entitled to receive healthcare, rehabilitation, etc. Although

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persons with disabilities are eligible for free health insurance, very few of them (2.3%)
have access to recovery services when they get sick or are injured. In addition to that, there
are many cases that persons with disabilities have to co-pay fee for medical services at their
own cost such as assistive tools and mobility assistive devices, which are not covered by
the health insurance.
In 2018, the government circulated two decisions that closely connected with the healthcare
for children in general and children with disabilities in particular. Firstly, the Decision
No.1437/QD-TTg on approving the 2018-2025 scheme on care for the comprehensive
development of children in the early years of their family and community life. Secondly,
the Decision No.1438/QD-TTg on approving the scheme to help children with disabilities
access community-based protection, care and education services in the 2018-2025 period.
Although the Decision No.1437 only applies for children up to 8 years old, the Decisions
No.1438 is applicable for all children with disabilities. These two documents supplement
each other and bring basic services closer to children with disabilities, which showed
government’s strong commitment in supporting children with disabilities.
With no doubt, healthcare plays vital roles in the rehabilitation progress of persons with
disabilities. However, Lynch and Pham (2013) found that although the rights to health
rehabilitation services are mentioned in the Law on Persons with Disabilities, their
application and practice is quite limited. Healthcare and related-cost were particularly
burdensome for individuals and families, especially those who are living with poverty.
Additionally, poor infrastructure and limited professional training, especially at commune
level, created barriers between users and service providers (Palm et al, 2015).
Rehabilitation services are currently limited to basic physical rehabilitation services with
orthopedic, speech and language, and occupational therapies in short supply across the
country. Such services are for the most part only available at provincial level. A study from
ISEE (2018) pointed a greatly need for psychological counselling from persons with
disabilities, yet, this type of service is not available to most of them. There is still a gap in
providing mental health support for persons with disabilities and their families.
2.4 The Participation of Young Persons With Disabilities in Education

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In Viet Nam, education for children with disabilities are categorized into three forms
including inclusive education, special education and semi-inclusive (integrated) education.
These three approaches are defined clearly in Article 2 in the Law on Persons with
Disabilities as follows:

1. Inclusive Education is an educational approach that accommodates both persons
with disabilities and persons without disabilities in educational establishments;

2. Special Education is an educational approach that is exclusive for persons with
disabilities in educational establishments;

3. Semi-inclusive Education (integrated) is an educational approach that combines
inclusive and special education for persons with disabilities in educational
establishments.

Among these approaches, persons with disabilities are encouraged to participate in
inclusive education. Semi-inclusive education and special education are applied only in the
case there are not enough conditions for persons with disabilities to pursue inclusive
education.
At present, there are some key policies to enable inclusive education such as:
- The 2010 Law on Persons with Disabilities which stipulates that the state shall provide

persons with disabilities with learning opportunities that are appropriate to their
capabilities.
- Decree No.28/2012/NĐ-CP provided detailed regulation.
- Circular No.03/2018/TT-BGDDT on Inclusive Education for persons with disabilities.
- The 2012 – 2020 Project to Support Persons with Disabilities, which aimed to increase
the mobilization of children with disabilities who are capable of learning and facilitate
their schooling, develop curriculum and learning materials, provide professional
training for educational administrators involved in the education of children with
disabilities, provide professional training for teachers who teach children with
disabilities, provide materials for students with disabilities, and provide sign language
materials for all levels of education.

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- Circular No.58/2012 on establishment and operation of Inclusive Education Resource
Centre for Persons with Disabilities with the aims to prepare children with disabilities
for schooling and provide support to teachers and schools for conducting flexible and
appropriate education methods for children with disabilities.

The Spotlight Report on the SDG4 Implementation in Viet Nam (2019) indicated key
challenges for persons with disabilities in Viet Nam to have access to quality education.
UNESCO found that the participation of children with disabilities in education is still at a
considerably low rate. Exclusion from school can be caused by both supply and demand
factors. On the supply side, education systems that are not inclusive can create barriers to
attendance, such as inaccessible schools, inappropriate programs and methodologies, lack
of trained teachers, and discrimination. Most of the teachers do not have the necessary
guidance or practical teaching materials to teach children with special needs. On the
demand side, even when attendance is physically possible, if the education is not
appropriate and the children needs are not being met, children may either drop out or
choose not to attend in the first place. Findings from the “Monitoring Educational Rights
for Girls with Disabilities Project Final Report” (2016) showed that girls with disabilities
faced exclusion on a daily basis, especially at school setting. More seriously, they often
encounter with bullying and violence in and out of school. Some typical forms of violence
that girls with disabilities experienced such as being hit, pushed, robbed of money, forced
to do domestic work, or attacked by their peers verbally or physically.
2.5 Employment Opportunities for Young Persons with Disabilities
To address the employment-related issues for persons with disabilities, Viet Nam has made
important steps in developing various policies and laws that enable persons with disabilities
to have better access to vocational training and employment, such as:
- The Vocational Training Law (2006), which includes tax provision for organizations

that provide training for persons with disabilities
- National Disability Action Plans 2011 – 2020 approved by Prime Minister
- National Action Plan on Rehabilitation by Ministry of Health, and local rehabilitation

plans (2014)

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- National Action Plan on Vocational Training by MOLISA’s Directive on Vocational
Training to all provinces

Most recently, Viet Nam has ratified ILO Convention 159 on Vocational Rehabilitation
and Employment for Disabled Persons, further proving the country’s commitment to
eliminating employment discrimination against persons with disabilities. Additionally, the
Disability Act has been enacted so that it gives persons with disabilities a fair change at
being considered for a job. It also ensures that reasonable adjustments are made for persons
with disabilities at workplace, in order for them to be able to complete their work to the
optimum standard.
Despite of continuous efforts, 93.4 per cent of working-age persons with disabilities (over
16 years old) do not have a marketable professional qualification as noticed in the Viet
Nam National Action Plan on Disability 2006 – 2010. Only 6.5% of them has vocational
training certificates while 2.75% has finished technical senior secondary schools or higher.
Among those who have completed vocational training, only 60% were able to find jobs
after their courses. These figures illustrate how severely limited access of persons with
disabilities to quality vocation training and job placement is.
In urban areas, persons with disabilities are four times more likely to be unemployed
compared to people without disabilities (UNFPA, 2011). In fact, about 55 per cent of
respondent in the National Survey on Persons with Disabilities in Viet Nam (GSO, 2019)
believed that employers do not want to employ workers with disabilities. Several barriers
to employment have been identified such as concerns about discrimination, inaccessible
transportation, inaccessible workplaces, lack of demanded skills… The exclusion of
persons with disabilities from labour forces not only affects persons with disabilities
themselves, but also creates economic loss, which could be added up to 3 and 7 per cent of
Gross Domestic Product (GDP) (ILO, 2010).
2.6 Social Inclusion and Empowerment of Young Persons with Disabilities
In order to become a full member of society, it is to get married, participate in community
events, and get in touch with people outside the home. In another word, persons with
disabilities have every right to social inclusion that bring them a sense of belonging to the

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community and society. However, discrimination against persons with disabilities is still a
main barrier to their participation in society (GSO, 2019). Only 42.7 per cent of the
respondents said that children with disabilities should attend school with other normal
children; while 28,8 per cent answered that it depends on the disability status, 24 per cent
stated that children with disabilities should attend a specialized school. The traditional
belief and cultural values towards persons with disabilities often frame that the causes of
disabilities are due to bad deeds or sins in past life. Therefore, although people have general
sense of pitiful sympathy towards persons with disabilities, they can become targets of
social isolation and ridicule regarding their respective disabilities.
Up to date, there are key organizations led by persons with disabilities such as the Viet
Nam Federation of Associations of Persons with Disabilities; The National Blind
Association; Hanoi Association of Deaf; Provincial Association of Disabled Persons such
as that of Hanoi, Ninh Binh, Da Nang, Quang Nam…; Viet Nam Association of Business
Enterprise of Persons with Disabilities (VABED). These organizations are actively
promoting the rights of persons with disabilities and offering various capacity buildings for
persons with disabilities via trainings. For example, the Blind Association offers free
trainings in making bamboo toothpick, mat and broom making, massage and some basic
computer classes. Thus, joining such organizations, associations and clubs will increase
participation opportunities for persons with disabilities.

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PART III. EXPERIENCES OF YOUNG PERSONS WITH DISABILITIES IN
TRANSITION TO ADULTHOOD

3.1 Introduction
In this section, we discuss about the experiences of YPWD during the transition from
childhood to adulthood. We ponder upon their life course with turning- point events as well
as the daily encounters and interactions in order to understand and interpret underlying
factor influencing the duration of entreating adulthood. Respondents’ personal tasks and
housework; social participation and network; self-awareness; expectation toward
adulthood are assembled with considerations to their type of disability, education
background, family dynamics and other relevant factors.
3.2 Daily Life Activities
Children and YPWD spend most of the time with is at school and at home. Among the
respondents that we had interviews with, there are two main living settings: primary care
(family) and alternative care. In the sample, young persons with medium level of disability
mostly live with their family, in contrast to those with severe disability are orphan living
in the shelter center. For those who live at home with their parents and it is the families
who are responsible for taking daily care of their children.
Based on our observation, parents of children with disabilities are very protective as they
afraid their children may get hurt or bullied. At the same time, many parents think that as
their children have impairment and disabilities, they cannot help with house chores.
Therefore, YPWD are dependent on parents’ support in most of the tasks:

“My child knows nothing, so I have to help her” (parent of a girl with
intellectual disability)
Furthermore, young persons with intellectual and learning disabilities have more
difficulties in daily living skills ranging from self-care skills. Therefore, constant support
of caregivers in almost every task are needed by serious cerebral palsy who are on the
wheelchair, and minimal support of parents, such as washing hair or scratching the back
are given to the less serious ones.

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To female youth, the cycle of ovulation and period mark the significant change in their life.
Because of this obvious change, a number of respondents’ mothers deliberately learned
how to teach them to use hygiene patch, which lessens the dependency and starts to elicit
the sense of ownership amongst the youth with disability:

“…during the period, it would be very embarrassing if the blood shows up
on my pants, so I have to learn how to use things to prevent it” (M.H).
More importantly, it is not what care are given for them, but who give it and what gender
matters. Sensitivity to gender appears when the youth entered their teenage. Before this
threshold, any available family member can help, but after that, either the youth graduated
from this support or they tend to exclusively accept family member with the same gender:
“She only allows her mom to help her take a bath, I have to refrain myself from
helping her in those women things” said a father of a girl with intellectual disability.
However, in the shelter center, due to the shortage in staff, they could not afford to have
male caregivers to male youth, hence one female staff takes care of several people at the
same time. Both female caregivers and male youth strangely encounter the physical
changes during male puberty. Behaviors such as unconscious masturbation, sexual acts,
etc., mostly of the cerebral palsy, are recognized but, “little have been done to prepare both
the youth and staff for this transition” (H, female teacher in the shelter center).
Regarding housework, when parents give children with disabilities opportunities to learn
and to participate like other non-disable family members, they seemed to be happy to help
and happy to be involved in family daily activities, which really boost their confidence,
self-care skills and development. In this research, all participants involve in certain
housework or shelter work tasks. Most of the popular tasks include folding clothes and
sweeping the house, the more complicated tasks requiring more tools, such as washing
dishes, cooking, washing clothes, etc. are done by family members with the fear and under
expectation that “he does it but not clean enough” (T’s mother, down syndrome), or “I
would do it much better and faster” (H. A’s mother, intellectual disability). Even though
youth demonstrates their willingness to take on more difficult tasks, parents’ reaction tends
to solidify the comfort zone without family responsibilities: “because of my disability, my

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parents said that I don’t have to do anything but to stay healthy” (T). In some accounts,
youth’s perception toward housework, one of the critical elements to demonstrate their
sense of responsibility and readiness to adult life, reflects the protective acts of their
parents, which might harness their adulthood quality of life.
3.3 Access to Education and Schooling Experiences
Children and YPWD who do not go to mainstream school often receive education at special
school or home-schooling at the institution where they live. Therefore, they do not have as
many social activities as their peer in mainstream school have. Moreover, young people
who live in social protection institution are not granted many opportunities to ‘go outside’
to protect them from sources of harm such as being bullied, being kidnapped …
In this research, we approached children and YPWD who study at inclusive schools and
special schools. For the cases that attend mainstream school, some of the significant
challenges that facing by children and YPWD. Most of the challenges are due to physical
barriers, stigma towards disability, lack of quality communication between teachers and
students and lack of support available for children with disabilities.

“There was one time that the teacher shouted at me because I could not
concentrate on the lesson. But it was because I could not look at the black
board continuously. When I do so, my eyes are very dried and tears may
run. That’s why I have to look down for a while. My current teacher does
not know about my difficulties but the others knew about it” (H, visual
impairment)
“I have extra classed on mathematic. I chose mathematic because I am not
good at this subject whereas it is the main subject. Moreover, other extra
classes are in the morning. And in the morning, the school does not allow
me to go in by my electric bike. I have to walk into school and it is really
difficult to me because my legs are weak. The mathematic class is at night
and school allows me to go inside by bike” (T, multi disability)
However, children often hide their difficulties and try to manage by themselves.

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“My class is on the fourth floor, so I have to walk up every day. I tried not
to bother anyone to help me get there every day, but I still have to do so on
days of periodical occurrence of my feet sore” (H, physical disability)
“My classmates understand my situation as the form teacher explained to
them, so they do not tease me. But friends from other classes in school, they
do not understand, so they tease me, they copy my difficulties, they called
me regarding my impairment. Most them are boys. Some girls stared at me.
But I do not care. Sometimes it was too much, so I had to hold my tears”
(D, physical disability)
This could add up to one of the reasons why children with disabilities often limit
themselves from participating in school activities because they do not want their disabilities
create troubles for their friends and teachers.
These stories above reflected a reality about the barriers to education of children with
disabilities at most of the mainstream schools. UNICEF (2019) found that there are many
children with disabilities remain out of the classroom, especially at primary or secondary
school ages and these barriers can be among the factors that increase out-of-school rate.
On the bright side, although there are difficulties at school, school is a fun environment
that they can learn, play and socialize with friends. Teachers, friends, exposure to social
settings, extracurricular activities have enriched youth’s life and fulfilled it with different
meanings. To most of female youth in mainstream schools, their life-changing phase was
the time entering senior high school, where they can expose to larger pool of friends,
teachers and learn to ride electric scooter; compared to the elementary and junior high
school, where most their friends are from the same communes. It could be seen that in the
context such as mainstream high school, their disability seems to be more invisible and
“peers’ maturity makes it more understanding and tolerant” (H). Moreover, it is
mainstream high schools that provide extracurricular activities such as camping, concerts,
volunteer activities, etc. to all students and leave options for the disabled. Even though the
school policy accepts absence of the disabled students in these activities, all of them
attended and felt “harmonious and included in the school” (N.L, physical disability).

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Especially, two female students were selected to study swimming and chosen as athletes
for Para-games (the ASEAN sport event for the disabled):

“It was my life-changing period. I got the chance to learn from alike seniors
and receive many advice and support from them" (T.H, physical disability).
“It was the first time that I realize I can be good at something, even though
it took so much pain and time to train, I felt proud of myself and I am happy
that I made my parents proud" (N.L, physical disability)
Children and YPWD receive many supports from their peers such as going to school
together, tutoring, comforting and sharing life stories, playing together at school and after
school. Similarly, guidance and support from teachers have very positive influences on
YPWD.
“I have no experiences with swimming before. But my swimming teacher,
she knew about my case via my friend who learnt to swim with her. So she
came to my house and convinced me to learn swimming. I learnt to swim
every day except Sunday. My teachers also sponsored my class fee. I felt
stronger and healthier. Swimming makes feel like I am growing and taller.
In the beginning, I was very tired and I wanted to quit. My teacher kept
encouraging me. Within 6 years I joint many swimming competitions. In
2013, I won 1 silver and 1 bronze medal. In 2014, I won 1 gold and 2 silver
medals. In 2015 I won 1 gold, 1 silver and 1 bronze medal. In 2016, I won
2 gold and 1 medal. They are all national competition prize” (N.T.H,
physical disability)
These are very simple acts of kindness but they mean a lot to YPWD, and it becomes a
source of motivation and strength that make them feel happier and stronger.
3.4 Personal and Reproductive Healthcare
Healthcare and medical needs
Children with disabilities generally require more specialized medical care and more
frequent hospitalizations than others. Additionally, these children may need medically
related services such rehabilitation, physical, occupational and speech therapy. In this

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research, all of participants have access to health insurance and monthly disability
allowance from the government. They shared that their parents helped them registered with
the government and there was no difficulty to get the disability identity card as well as the
disability allowance. Also, families received support from the local organizations during
the application process if they face any difficulty. Usually, the disability allowances are
kept by their parents to afford daily living or to cover medicine and other expenses.
When being asked about current health status, those who experienced headache, dizzy or
muscle pain often let it pass naturally without informing parents and caregivers. For the
cases that young persons have disabilities and other chronic disease such as heart disease,
they need daily medicine to ensure the functions of body. For example, M.L (physical
disability) shared that “I need daily medicine and I am OK with that. I sometimes need my
mom to help me get the medicine when I feel painful”. Children and YPWD are often
referred to rehabilitation centers in their neighborhood like the cases in Quang Tri and Hue
or being referred to the hospital for medical treatment in Da Nang.
Although young persons have no complain about the health care services, some parents
expressed confusion towards the explanation from doctors about their children’s disability.
More specifically, during the focus group and home visit, many parents said that they do
not have enough knowledge and information on how the disability children development
in terms of physical and psychological development. Additionally, families shared that
insurance only cover a part of the medical expense. Families need to self-fund the assistive
devices and other rehabilitation services. These findings confirm the results from ISEE’s
research about financial difficulties of families of children with disabilities in having access
to rehabilitation services.
Reproductive healthcare
According to UNFPA (2018), YPWD, especially young women and girls with disabilities,
are more vulnerable to violence than are their peers without disabilities. They face different
forms of violence, including physical, sexual, psychological and emotional abuse, bullying,
coercion, institutionalization, trafficking, and forced sterilization; and beliefs and practices
not conductive to human rights such as child marriage and female genital mutilation (p.17).

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Therefore, understanding one’s body and the changes it undergoes during puberty, and how
this relates to sex, sexuality, and reproduction through appropriate sex education, is a
fundamental and important need that YPWD should have information about (UNESCO,
2018).
Through sharing from young people, their parents and teachers, we found that there is
ignoring need in relation to reproductive healthcare whereas YPWD face the same array of
sexual and reproductive health issues like young persons without disabilities. Usually,
children with disabilities often experience delays in achieving developmental milestones
which make parents think that puberty may occur later or not at all for their child with
disabilities. In some other cases, parents often consider puberty as a natural part of physical
development and let it happen naturally without considering to give advice or consultation
for their children. In fact, children with disabilities’ puberty usually occurs at the same age
and rate as typical developing children. One boy with vision impairment shared:

“I felt like I am taller and heavier. I know that boys go through puberty at
15 years old, and girls go through puberty at 13 years old. I let it pass by,
no need for caring”.
During puberty and adolescent, YPWD, like their non-disabled peers have normal sexual
desires and curiosities. A boy with learning difficulties (16 years old) said that
“We (groups of boys) often talk about dating girl and kissing girlfriend. I
search video about kissing on YouTube. There is also video about people
having sex. I watched it alone and I feel normal when I watch those videos.
But I never thought of copy those behavior, otherwise I could be arrested”.
From the sharing, it seemed that young people do not have enough information about sex
education. As a result, they have to find information by themselves or by discussing with
friends. When sex education is overlooked, YPWD will have more difficulties to
understand the development of their own body and emotion.
Persons with disabilities are often denied access to knowledge about sexuality, sexual
behavior and services leading their sexual marginalization. One possible reason is that

24

parents lack of skills to deliver the information and explain for them. Like one mother
shared,

“I know that he has biopsychological changes, but I could not explain to
him, and I do not want to show him that. His puberty is different than other
children (without disability)”.
In addition to that, persons with disabilities’ marital desires are usually ignored due to
societal misconceptions and assumption that they are burdens rather than contributors to
families and society. A father of a girl with disabilities share his thought about children
with disabilities’ marital status:
“I honestly wish that my daughter would not know about that. Because if
she does, it would be very difficult” (parents, Hue)
As some caregivers may fear that talking about sexuality will promote sexual behavior,
children with disabilities are often sheltered from sexual education. In fact, evidences
suggested that by discussing about sexual related topics, the likelihood of abuse can be
reduced or eliminated.
From the perspectives of teachers and staff at schools and intervention centers for children
with intellectual disabilities, they noticed that different types of disabilities have different
experiences during puberty. Their sharing is similar with the findings of Clacaterra and
colleague (2019) that the pattern of sexual maturation of children and adolescent with
disabilities may differ from that of children in the general population. Moreover, many
studies also found that adolescents with intellectual and developmental disability
experience mood disorder and behavioral disorders with common symptoms such as
anxiety, depressions, social withdrawal… (Arkami and Davudi, 2014). However, the
teachers have limited understanding on the patterns of puberty for different types of
disabilities which may create more difficulties for them in prepare the students in this
particular period. Therefore, there are strong needs and tasks for families, teachers and
wider support networks to support YPWD to have better understanding about their body,
biological and psychological changes during puberty and reproductive health care in a safe
and meaningful way.

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3.5 Social Participation
Family relationships
The parent-child relationship plays a crucial role in the mental health development of every
child (Bowlby, 1989). Furthermore, the active involvement of parents throughout transition
to adulthood is among many factors that enhance the transitioning outcomes of young
people with disabilities. At the family level, the mothers are often the key caregivers who
help their children with self-care, independent activities, school work and peer interaction
(Denis P. Hogam – Family Consequences of Children’s Disabilities). As such, the
attachment between mothers and children was developed and strengthen which bring about
emotional security, sense of belonging and motivation for children. However, these gender
patterns change and vary based on different context. In our study, although the participants
in focus group are mostly mothers, fathers are also key caregivers who involve in daily
care for YPWD such as in physical exercises, physiotherapy, taking children to hospital
and schools. Yet, the roles of fathers are more predominant in families that have sons with
disabilities. The following case from a boy with cerebral palsy reflected the support of his
father that helped the boy have positive transformation regarding physical and mental
health. From a child who could not walk, now T is able to do self-care with little support
from family members and he is able to use computer as a mean of livelihood and self-study.

“When I feel sad I often share with my father. He is the one who take care
of me since I was very little. He took me to many rehabilitation centers, from
the North to the South for 8 years since I was 1 year old and thus I had very
good improvements. In the beginning I could not sit, I could not move and
I could not control my neck. Now it is much better. My father can even help
other families who also have children with disabilities who need
physiotherapy. He took me to school and IT class, When the IT class
rejected me, he did his best to support me to learn.” (T, cerebral palsy, QT)
In contrast, some respondents reflected on how difficult they thought things were for their
parents and families when having a child with disability. Most of the respondents are aware

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of the difficulties their families facing with regards to financial struggles, lone parent with
daily care and house chores, and emotional stress.

“Sometimes I feel sad … the reason could be because that I do not have
father. My mom told me that when I was few months old, my father’s family
saw my disability and told my mom that I was not their grandchild. Then my
parents divorced. Sometimes when I saw my friends’ family together, they
have mother and father and I felt a bit sad but I do not want to share with my
mother because I don’t want her to feel sad too. But that feeling does not last
long. Sometimes I shared with my friends and they comfort me which make
me feel better. (D, physical disability)”
“In 2008 … my parents divorced. People said motherhood is the greatest
thing, but to me, she is only the one who brought me into this world. I
acknowledge that. But it was my father who raised me up. Because if you just
give birth to a child but you do not raise that child, it is not really a mother”
(C.M.H, physical disability)
These particular cases gave us an insight of how family dynamic affect children’s mental
health as well as emotional development. As shared by the children, even if they have
troubles, they do not want to share with parents because they do not want to make them
more tired while life is already hard for all of them.
Friends and peers
Friendship and peer interactions is essential for all individuals during the development
years and later. Without social interactions or friendship, one may experience isolation and
loneliness. Often, children and young people with disabilities do not perceive themselves
as different from their peers. However, their peers frequently perceive and treat them
differently. Sometimes, due to lower level of social skills connected with their disability
lead young people with disabilities to struggle establishing meaningful connections with
their peers, hindering the development of meaningful friendships.
The research findings showed that young people with disabilities, especially those who
have intellectual disability study in special school setting report positive friendships, most

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often with other friends with disabilities. For instance, T who has down syndrome shared
that he likes to hang out with friends who study with him at special school and he often
imagines how he would going out with his group of friends. He talked about his fun time
with friends with cheerful voices: “We went out for a drink, two couples and we had fun”.
However, his family and teachers confirmed that what he shared was just his fantasy. In
fact, T only hang out with friends at school and they never went out together outside the
classroom. Yet, his story reflected the joy of having friends and the wish to have fun with
his peer.
In integrated schools, YPWD often experience bullying and negative attitude which restrict
the participation of YPWD in education and may lead to social exclusion. A group of
mothers commented that “My son told me in class friend divided into groups and he has
only one friend”; “My son also has only 1 friend”, “My child had difficulty in making
friends at school”. This finding tie well with the previous study of Mount Saint University
(2016) on the experiences of girls with disabilities with bullying and violence at schools.
Besides, due to the differences in hobbies and social class, YPWD do not always participate
in friends’ activities that cost a sum of money: “My friends play even harder than study.
But I do not get along with them. Firstly, my financial situation does not allow me to join
that. And I also do not like to join with them. They often have birthday party, watch movies.
However, I sometimes eat out with friends” (physical disability, Da Nang)
Nevertheless, friendships with individual without disabilities do exist. A girl with physical
disability has shared about her friendship with the girl next door as a meaningful
attachment:

“I often hang out with my classmate, who is also my neighbor. We often
visit each other’s house and talk. We share many things about school and
life. She takes me to school on her electric bicycle every day. Her father
know I have difficulties so he bought that bicycle so that she can take me to
school. She said when she grows she will earn a lot of money and we will
travel together”. (physical disability, Da Nang)

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Having friends also helps YPWD to be more included in school, community and
society. N.L shared her positive experiences and benefit of having a group of
supportive friends.

“I participate in most of the activities at school with friends such as
camping, volunteer activities. I feel happy to be included and happy to join
with friends. When I went to high school, I even had more friends because
I met many people. My friends take turns to take me to school every day
which make me very happy. And by having many friends, I have different
perspectives toward life. (physical disability, Quang Tri)
These evidences suggested that companionship is not the only benefit of friendship, it also
helps develop social skills, such as building relationships, resolving conflict, acquiring life
skills and knowledge that essential for adulthood.
Community Participation
Inclusion in the community is very important to enhance a person’s quality of life. In this
research, the community involvement of YPWD varies depending on the opportunities and
supports available to them. These opportunities often come from schools, youth union,
charity associations, clubs, village festivals…
Children and YPWD who study at mainstream school have access to a number of activities
organized by the schools and youth union such as summer camps, volunteer activities, sport
competition, etc. Through such kind of activities, they are able to make new friends,
develop social skills and feel more active.
“Besides studying time at school, I joint some activities at community such as lion
dance. My friends asked me to join with them and I like such kind of activity” (H,
visual impairment)
Although social activities are made available, many respondents refused to participate as
they were afraid their difficulties would create troubles and affect the activities.
“I know some activities organized by the commune, like dancing. But I can only
dance with hand so I quit. I am afraid my disability would make it difficult for the
whole group.” (D, physical disability)

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This sharing also reflected the fact that there was inadequate social support which becomes
common barriers to the participation of those with disability, especially children and young
people.
For the cases that young people live in remote areas with fewer neighbors and friends, the
frequency to hang out or socialize within their community is rare. Moreover, community
activities are only organized in some special occasions several times a year. Therefore,
YPWD have limited access to social participation in their community.

“I only hang out with my close friends in high school, they live quite far away from
here so in summer break time, we only meet them like once a week” (Hanh).
“There are some shared activities in the commune like Children's Day, Mid-Autumn
festival, but I am not interested, then they only came to give my mom some gifts for
me” (N, physical disability).
Additionally, our respondents shared that many community activities are available for
adults only and children or young people have no relevant “tasks” to be involved. The most
common activities that they attend are Children festival, Full-moon festival, Lunar-New
Year festival, those festival that supposed to be made for children only.
Thus, it seems that most of the activities at the community are top-down and young people
are asked to participate only in ways that have already been decided from above. Top-down
approach might be easier to introduce, administer, and evaluate in many communities. Yet,
it limits the equality in decision-making and participation of local people, especially those
with disabilities. In contrast, the bottom-up approach could bring more advantages when it
involves local people to make decision together, which can greatly increase the chances
that activities and exercise will fit the individual as well as community needs and
possibilities.
Online Networking
The Internet is becoming a natural part of everyday life of children and young persons
living across the globe. In this research, we found many examples and evidences of
children using Internet as a way of learning and connecting to the world. Most of the
respondents exposed to some sort of social network, and the two most prominent ones are

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Facebook and Zalo. The majority of their profile contains selfie photos, family member
photos, and activities that they are interested: With sparkling eyes, L showed researchers
his recent work on his father’s tomb; T (Hue) guided researchers how she masters the photo
filtered application; and T (cerebral palsy) pointed out how he helped other community
members in technological issues. In these platforms, they are represented as capable and
independent individuals without physical body limitations. These findings significantly
open the opportunities for learning, working and self-representation of youth with
disability, especially in their transition to important phase of life.
The most popular purposes of using smart phones and Internets that reflected through the
findings are (1) Looking for News and opportunities; (2) Talking to family or friends (3)
Using social network, posting photos, comments online; (4) Playing online games:

“I used smart phone to go online, use Facebook. And I also use Google to search
for information, job opportunities. I found the job that I am applying to via Internet”
(T.H, physical disability)
“I used YouTube to watch videos online, such as video about never looking down
upon others, which talked about what goes around comes back around” (M.L,
physical disability)
By using the Internet, YPWD have more ‘participation’ than in real life. Social network
and Internet have rendered youth with disability freedom of self-expression and another
identity, where their disability could be blurred, their interconnection over others are
highlighted, and their self-learning process are enhanced. Truly, the Internet can transform
children’s lives – for better or for worse. It can open up a new world of entertainment and
information and allow children to learn in new and unexpected way (UNICEF, 2019). At
the same time, it may also expose them to unknown and unprecedented dangers. For
instance, many caregivers and parents worried that their children may watch ‘adult movies’
or violent scenes which not appropriate for their age and may trigger their violent and
uncontrolled behavior. Therefore, although Internet gives lots of opportunities, parents are
very cautious and carefully supervise children’s online activities, which is totally
understandable and reasonable as long as it serves for the protection purposes.

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3.6 Conclusion
The results from this section showed that most of young people with disabilities have
participated in daily life activities and the degree of their participation depending on their
physical abilities, level of cognition, age and personal interests.
School is the most familiar environment for all participants, however, not all participants
have positive experiences at school due to the lack of support from the school, stigma and
limited understanding on types of disability, which result in young people’s hesitation in
participation at school activities. On the other hand, young people who received
encouragement and support from schools and teachers had positive achievements in
personal development, which became a source of motivation for young people to continue
their education. Regarding reproductive health care, this is still a sensitive topic to be
discussed among parents, teachers and young people. Thus, adequate information about
sexual and reproductive health care was not made accessible for young people with
disabilities, especially those with intellectual disabilities. One of the reasons is that
parents/caregivers do not have enough skills to deliver the information to their children. It
is important to note that explaining about reproductive health care for those with disability
seemed to be more difficult than those without disability. Therefore, young people with
disabilities are not counseled about the physical changes of their bodies as well as the
impact of those changes. Furthermore, there was still stigma toward persons with disability
that they should not know about the biology development and sexual and reproductive
health care. Although social opportunities are less prevalent for young people with
disabilities in this research, they found more opportunities from the Internet platform in
which they can make friends easier and participate more in the virtual community.

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PART IV. INFLUENCING FACTORS DURING TRANSITION FROM
CHILDHOOD TO ADULTHOOD WITH DISABILITIES

4.1 Introduction
In this section, we discuss the influencing factors during the transition from childhood
to adulthood of young people with disabilities by analyzing the individual factors,
families’ concerns and the supporting mechanism. Furthermore, resilience emerges
from the findings as an important factor to facilitate the transitioning as well as the well-
being of young persons and their families. The data was analyzed through the lens of
Ecological theory looking at ecological system from micro level to macro level. Within
the scope of this research, the actors of ecological system are represented by individual
factors from YPWD, family concerns and preparation, available support and
intervention which will be analyzed in the following discussion.

4.2 Individual Factors
Personal Identity
Identity encompasses the development who one is, what to value and which direction
to pursue in in a goal-directed future (Smith & O’brien, 2014; Millington and Madden,
2017). More importantly, identity is one of the indicator of successful transition (Arnett,
2000; Erikson, 1968). Newman (1988) contended that identity achievement occurs as a
result of a period of role experimentation which often happens during the childhood
time when children start to aware of the variety of roles, values and lifestyles in their
culture. Therefore, it is important to understand how identity development associate
with the attainment of the developmental tasks of adulthood (Erikson, 1968; Hodapp,
2010).
In this research, even though YPWD live with physical, mental and movement
boundaries but some of them do not consider these features in their self-identity.
Johnstone (2014) explained that in some cases, individual with disabilities shift the
focus of their identity away from personal impairments which can be a sign of denial.
However, the case of T, a girl with physical disability gave us another point of view: “I

have not thought of using a wheelchair. My legs are not too week, yet

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not too strong. So, I will try to walk at my own pace. I do not see myself as a person
with disability. I am very optimistic”. As such, T chose to accept her difficulties and
decide to integrate her disability into a positive self-concept instead of being upset and
dependent on others. Similarly, other respondents also shared “I think I am a happy and
helpful person. I like to help others, as long as I can”. “I like to take care of my family
and people around me”
Yet, some females have their eyes moist with tears when being asked about their
reactions to social stigma towards the limitations they carry:

“people glare at me as something very strange. They also laugh, I think. So, I
tried to disappear as fast as I can” (Chinh)
“people look at me sometimes but I don’t care because I think they are not that
understandable” (Hanh).
The sensitivity to social stigma, tendency to avoid and expressed needs for invisibility
of their disability reflect the existing and highly ingrained social stigma as well as the
voiceless underrepresentation that youth with disability are facing. Nevertheless, most
of the time YPWD could not share and speak out their feelings. For some cases, they
can only share with who they trust and feel comfortable with. As a result, YPWD often
feel shy, less opened and hesitate to participate in social activities.
The meaning and expectation about adulthood
The visualization and realization of adulthood among YPWD is the reflection of people
and the environment they are surrounded with. Researchers attempted to resist to the
misleading questions and explanations of the questions directly related to the word
‘adult', and most of the time, that word is easily defined by referring to their senior
family members or teachers, who they have grown up with and learnt the meaning of
being ‘adult'.
The overarching theme of young people when they phrased their understanding of
adults are: “maturity", “independence", “work", and “responsibility”. To be more
specific, the detailed tasks of being adults can be listed as: “think before we say”, “do
things by my own", “earn money by ourselves", “have a stable job”, “buy my mom nice
things", “pay it forward for my dad". It is worth noting that though youth regard

adulthood as living independently, some visualize it as “living with

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parents and taking care of them". The tasks are not only self-centered but also family-
centered. For those that live in the segregated center or orphanage, they have more
difficulties listing the tasks and relating adulthood to themselves. More hesitance, less
descriptions are observed among them, compared to their counterparts who live with
their family.
Shaping the definition of adulthood around their upbringing and living environment,
YPWD also expect their adulthood correspondingly. Their expectations lie in the near
future and intermediate goals, including obtaining jobs that they think they might fit
for. Only few females with disability who made her education to university mentioned
their plans to complete higher education and find jobs relevant with what they studied.

“I started to think about my future when I was at grade 12, because at that time
I was about to enter university. I want to graduate with good degree so that I
can find a stable job” (L, physical disability).
“Once I graduate from my university (major in social work), I can work for the
commune, the charity association or I can further study teaching methodology
so that I can teach students. Or another option is working at the social work
department at the hospital (H, physical disability).
Marital status is barely included in the future frame of these young people. Three male
respondents answered with confidence that they want to get married, the rest of them
and their female counterparts responded with resistance that they do not think of that
factor in the near future:
“It’s the story of fate and not priority, so I don’t think I need a husband in the
near future" (T.H, physical with disability)
“I don't know if there is a good man out there and who don't see my disability as
a big thing. Sometimes it is better not to have husband than to have a violent
one" (My Le)
“I don’t know if I can take care of another women" (Son)
These findings similar with what Hussian (2007) found in his research that young
people in Southeast Asian countries have various concerns about marriage and about
perceptions of their suitability as marriage partners, which reflect general sense of

disadvantage as disabled people. Similarly, the findings from General

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Statistic Office (2019) showed that most respondents stated that the decision to marry
or not depends largely on their disability status. Thus, it can be seen that persons with
disabilities face inequality in marriage, although they are entitled with the right to
marriage and family.
Personal Autonomy
Autonomy gained from the independence in stating opinions and making decisions,
plays important role in transition to the life of adulthood. Without the autonomous mode
in taking charge of their life, YPWD might fall in the long-term overprotective net of
their family assistance or external help rather than accumulate their living
independence. Interviews revealed the decision-making power and freedom of
expression position in their day-to-day activities, lifestyle and recreation, and education.
While there is not salient difference between young persons with different disabilities,
but there are significant distinctions between the males and the females.
All accounts have their own space in deciding what they want to do on the day-to-day
basis, whether they would like to go to school and what kind of school. Four accounts
decided to drop out the mainstream schools since they thought ‘they could not catch up
with their classmates'. For some that are good at studying, they are the ones deciding if
they want to go to extra class, which university they want to enroll. Apart from those
above issues, it is culturally accepted that financial decisions and future occupations are
not fully determined by young persons with disability, except one that work in
vocational center and has his own income:

“I was given money to have breakfast every day, it is 10,000 VND/day. If I do
not spend it all, I gave the rest to my mom" (Nguyet)
“I do not have allowance. I do not need anything. If I do, I’ll ask my mom" (Diem)
Gender differences, and the perceived risks to girls in their teenage and adolescence
have constrained parents of female YPWD from giving them space in many decisions.
Despite the fact that all of the females are asked for their opinions, they are not the ones
deciding where they want to study in schools, and need to have parents’ permission in
what time they can hang out and whom they go with:
“If I hang out, my father should know whom I hang out with" (Hanh)

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“I only roam around the house so that my mom can keep her eyes on me" (Huyen)
The fear of their daughters “being abused or harassed or made to have babies out there”
are ingrained in the parents, especially when they see their daughter with disabilities
that might not able to fight back in those risky situations. It provokes the awareness of
the secure society not only for girls, but girls with disability, that address parents’
worries and encounter barriers to their autonomy.
Future Orientation and Employment
Researchers have found that compared to non-disabled peers, YPWD are more likely
to experiences unemployment, lower pay, low-skilled job and job dissatisfaction (ILO,
2018). Therefore, having information and understanding about children’s needs and
aspiration for future job is of great importance to prepare young people for the
workforce. When being asked about future job, only few young people could give a
clear answer about what they want to once they grow up. Moreover, most of them
expressed self-stigma toward their impairment as they believed that having disability
would make them unqualified.

“I plan to work for Information and Technology sector. Because I like to work
in the office (smile). I cannot do heavy work” (C.M.H, physical disability)
“I think I will work for factory, but I do not know if I can make it because sewing
requires the working to sit continuously. I often have back pain when I sit more
than 2 hours” (N.D.S, speech impairment)
The findings also found that children and young people have tendency of thinking about
the future job that similar to their parents’ job. For example, many respondents think of
“being a worker, or a mason” as these are their parent’s current jobs. These are also the
common jobs in the neighborhood. This reality reflects the impact of how living
environment influence children’s thoughts and ideas about future life. Besides, the
choices for vocational training and employment seemed to be quite limited to YPWD.
The available options for young people to learn are within sewing, making incense
sticks, making hand-made products, farming, printing. Several respondents who are
currently studying university demonstrated some aspects of working-readiness skills
such as ability to search for job of interests and what skills needed to develop in order

to be successful on those jobs. On the bright side, it is noteworthy to

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see almost a quarter of the respondents showed their interests in IT jobs, which can open
more opportunities on vocational training and job on this field. The rest of the
respondents have limited information and orientation about possible future jobs.
4.3 Family’s Concerns and Preparation
Based on the findings, we identify the most common concerns from parents of YPWD
during the transition to adulthood including: children’s well-being (1), social exclusion
(2), children’s independence (3) and future employment (4).
Firstly, parents worry about the protection and well-being of their children when illness,
old age, or death eventually prevents them from caring for their adult child with
disabilities. (Family consequences of children with disabilities). Most parents shared
that they fear of getting old and being unable to help their disable child. They
emphasized: “I need to be healthy to make up for my child”; “I want to be healthy so
that I can take care of him”; “I need to take good care of myself, so that I am healthy
enough to care for my child” (Parents from Hue, Quang Tri, Da Nang). Only a few
parents showed strong and consistent will to help their children to be more included in
the society. More specifically, they believe that having access to education is one of the
most effective ways for YPWD to learn and to have social interaction.
Secondly, parents and caregivers of children and YPWD have great concerns about their
exclusion from community activity and mainstream services. Many parents shared
particular cases in which their children face high levels of exclusion and unmet needs:

“There are many people questioned about my child, for example what is
wrong with my child? When children hear such kind of comments or
questions, they may feel shy and sad. Therefore, I have to correct them that
they should not ask that way. Therefore, my child is quite confident” (A
mother of a child with cerebral palsy, DN)
“When my child went to school, he could not get along with his classmates.
Although the teachers encouraged his friends, but they could not play with
each other. His friends felt pity for him, but they did not play with him. And
my son could not play with them either”
These concerns were echoed when parents shared their children’s experiences with

stigma and discrimination at school and at the community. The children

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were often called by their disability or receiving curious comments on their physical
situations. As a result, parents worried that they might get hurt and thus, found it more
difficult to integrate with society.
Thirdly, all parents in the research showed a sign of dilemma and conflicted thoughts
towards the abilities of their children. On one side, parents want their children to be
more independent. But, on another side, parents often view their disable children as
passive and dependent non-contributing citizens. Thus, they have less hope or aspiration
about their children’s future. Parents have tendency to accept their children’s disability
status and think of disability as burden rather than looking at children’s strength. Shah
(2008) found that adults do no always prepare young disable people for the same futures
they envisage their non-disabled children. However, by having low or no expectation
for disabled children, parents by chance giving up opportunities for children to try and
thrive. Moreover, children and young people with intellectual disabilities are often cast
into the role of the eternal child that require protection, love, care, means of survival
forever.

“Although he is big now in term of ages, but he is still very childish, so I
have to follow his childish personality. He does whatever he wants to do”
(Father of children with intellectual disability)
“I think that I will help him for the rest of my life. He could not remember
what I taught him”
Lastly, the employment of YPWD is also among the most popular concerns. Parents
had tendency to think that YWPD, especially those with learning disability or
intellectual disability may be unable to perform the job requirements or unable to access
employment opportunities. Therefore, they only think of low-skilled job where young
people can make end meet on a daily basis. This way of thinking may encourage YPWD
to drop out of education system. For instance, a girl with learning disability said “My
relatives told me if I cannot follow the class, I can drop out of school. And my cousins
will teach me baking, so I can work for her”.
Despite the fact that families of YPWD found the key concerns regarding their
children’s transition to adulthood, they are still struggling with finding the long-term

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solutions that can help them overcome the difficulties. Parents shared that they lack of
information and skills on caring for children with disabilities.

“I wish to attend a training for parents on self-care skills for children with
disabilities, so that I can teach my child”
“I was looking for a free course where I can learn about my child’s
behavior”
Furthermore, their efforts in supporting children and YPWD are mainly about self-care
and daily living activities such as personal hygiene tasks, house chores, schooling or
buying groceries. Parents and families have no awareness of the importance roles of
goal setting and planning in preparing for children to adulthood. When discussing about
the plan to help their children in transition, majority parents talked about their wishes
toward children such as: “I wish my son can be independent”; I wish my child can find
a job”; “I wish my son can be a helpful person” …But, little is mentioned about concrete
actions and plans. Fewer than five of the respondents indicated clearly what they plan
for the transitioning of their children: “I will teach my child self-care skills. And I will
teach them to turn down on bad people and how to participate in activities at school
and at community”. There is only one father of a child with vision impairment shared a
plan that addressed key components of transitioning:
“I will encourage my child to overcome all the difficulties in life and I will
comfort him during the challenging time. I will teach him to manage budget
so that he can save money. I will guide him to make a plan for future job
after graduation. I will remind him to not to be rush in romantic relationship
as he is still young and he needs to focus on education and career and our
family is still in difficult situation”
According to PPAL, transition planning refers to a process for youth with disabilities
that focuses on working towards results-oriented goals after high school, such as
vocational rehabilitation, integrated employment or independent living. It also helps
them develop life skills through hands-on experiences, so that they can participate in
society as contributing members. Many researches have proved that extensive planning
during transition to adulthood will have a long term high-quality influence on the life

of individual with disability (Kim and Turnbull, 2004). Nevertheless,

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the findings indicated that little attention has been paid to the transition planning with
both YPWD and families. Thus, this is an important finding in the understanding of
how YPWD are prepared to adulthood and it also indicates a gap to work on policies
and supporting mechanism need to assist the transitioning of YPWD.
4.4 Available Support and Interventions
Children and YPWD, especially those with severe disabilities, often require home and
community-based services, which is the services or other supports to help persons with
disabilities of all ages to live in the community – to optimize their health, functioning,
and well-being while enabling them to live in their homes and participates in their
communities. Such services may include a variety of health services, such as home
health care (e.g. skilled nursing care; occupational, physical, and speech therapies;
dietary management, pharmacy), durable medical equipment, case management,
personal care, caregiver and client training, and health promotion and disease
prevention.
Besides the disability allowance receive from the government, persons with disabilities
often receive support from developmental projects implemented by charity association,
non-governmental organizations. In this research, all of the respondents are
beneficiaries of the Community Base Rehabilitation Projects (CBR), funded by
Research Center for Inclusion (RCI) and operated by RCI’s local partners. The CBR
projects focus on 5 components: Health – Education – Livelihood – Social –
Empowerment (WHO). Being beneficiaries of the projects, YPWD and their families
have access to various activities such as school support, social and empowerment
activities, training to caregivers on disability, rehabilitation, self-care skills; vocational
training, livelihood activities that adheres to the 5 CBR components.
Talking about the current interventions for YPWD, project staff from Hue identified
several barriers and gave some suggestions to support the transition:

“Parents of children with disabilities have typical daily schedules for their
children involve going school and going home. They do not think of
preparing for their children’s future. Therefore, to prepare for the
transition to adulthood, firstly project staff and parents need to have

information about the transition. Secondly, current education

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