RCI research on Transition to adulthood (Final report)

curriculum only provides information about hygiene and self-care and
basic information about abuse prevention. The curriculums do not have
enough information about the biopsychological changes or orientation for
young people about their capabilities, future career and expectation”.
(Project staff, Hue)
All project staff and teachers who work directly with young people recognize the
changes in children’s behavior and cognition as well as biology and physical changes.
Nevertheless, they are not aware and informed about the transition process between
childhood and adulthood. As a result, although the practitioners found a gap between
physical changes and cognitive changes in the development of children with intellectual
disabilities, there is no assessment and planning for transition from child to adult. The
project staff at local level shared his opinion about the transition period:
“YPWD are not fully prepared for entering adulthood. Parents let
transitioning pass by naturally. It means that parents only intervene when
unexpected cases happened. Most of the families of children with
disabilities are poor and they have limited understanding and awareness
about disability. But I observe that families of children with disabilities who
have better living conditions would have better preparation for their child”
(Project staff, Da Nang).
The project staff from the all the three project sites shared their concerns on the future
employment of YPWD. They found that connecting YPWD with the employers is the
most difficult task. There is a fact that being excluded from job opportunities increases
higher chances of living in poverty and trapped in the poverty cycle, which may lead to
social exclusion. However, according to the project staff, even though YPWD receive
adequate vocational trainings, the rate of trainees who succeed in finding jobs is quite
low.
All community workers and project staff shared other challenges in working with
YPWD such as: inadequate staffing, lack of data and evidence on disability, lack of
trainings to advance their expertise… Although the project staff are very dedicated, still,
these factors have largely influence the quality of interventions offering for YPWD in

the community.

42

4.5 Resilience of Young People with Disabilities and Their Families
Very often, professionals focus more on the weakness of the family or the child rather
than their strength and capabilities. In fact, there are families that do well in the face of
adversity and disability in particular. Therefore, understanding the resilience of families
and individual would shed a light on how families overcomes risks factors and what
prevent them from that.
According to the American Psychological Association (2011), resilience is the process
of adapting well in the face of adversity, trauma, tragedy, threats or significant sources
of stress. Resilience has been considered as a credible means to help people cope with
adversity and life changing events. In the context of disability, Stuntzner and Hartley
(2014b) described resilience as:

“An individual’s ability to learn and enhance personal skills and
characteristics following the presence of a disability which can be used and
refined to help them cope with their situation and disability-related
experiences, improve personal insight and knowledge of their skills and
potential to overcome challenging life events, and to live in a way that
reflects a better quality of life. As a result of their decisions, actions, and
behavior, persons with disabilities are able to learn skills that help them
experience fewer negative thoughts and feelings, recognize and
acknowledge positive ones, and make decisions that help them live the life
they seek”. (p.14)
According to Ungar (), resilience is recognized as depending on both individual and
group strengths and is highly influenced by supportive elements in the wider
environment. These positive reinforcements in children’s lives are often described as
‘protective factors’ or ‘protective processes”. They operate at different levels and
through different mechanisms such as individual, family, communal, institutional, and
so on – and frequently correlate with and complement one another (Michale Ungar,
Handbook for working with Children and Youth: Pathways to Resilience across culture,
p6). From the findings, we identified 3 key protective factors that helped nurturing the
resilience of young people with disabilities and their families.

43

Family bonding: According to Wood et al (2018), the positive bonding and quality
parent-children relationship facilitates the development of the child’s capacity to bond
with others and respond to adversity. Despite many challenges in parenting children
with disabilities, the parents in our research accepted them as who they are and shared
love, care and compassion towards their children “I felt her love through her kissing
and hugging”; “He said he loves mom and dad”. “All I want is to have good health so
that I can take care of my child” (Parents from Da Nang). Maintaining close interaction
between parents and children helped them gain more intimacy and understanding of
their children, thus, strengthening their commitment to keep family together and strong.
Moreover, they look at their children’s strength and the joy they bring to the family:
“She is smarter as she grows up” (Parents from Hue) “My child is able to help me a
little. She is my source of motivation”. In addition to that, parents also experience love
and pride that their children have foster in them: “I am very proud of my daughter, when
mom is not home she takes good care of our house” (Parents from Quang Tri). “I am
proud of her because she helped parents and took care of her sibling”. “He has good
study orientation and he has a kind heart”. “My child is very tall”, “My child loves mom
and dad and listen to parents very well” (Parents from Hue, Da Nang, Quang Tri).
From YPWD’s perspectives, the role of parents is critical in determining whether a
disabled child has hope, expectation and aspiration, and the resilience to overcome
barriers they may encounter over the life course. In this research, some YPWD
identified their families as a source of strength and motivation.

“I feel closest to my mother. And my parents always ask for my opinions
about school choice and other things. My family always love me and care
for me so I have nothing to worry. Then I feel more optimistic and family is
the source of my strength, my optimism” (L, physical disability)
Optimistic and positive coping: The sharing from our respondents have demonstrated
their inner strength through the way they look at disability, adversity and future life.
Through the story of N.L (physical disability, Quang Tri), we learnt that she succeeded
in university entrance exam after the first-time trying in 2018 and she would study in
another city far away from her hometown to pursue her bachelor degree in technology.

She said that “In the beginning my mother really worried for me but I

44

convinced her to let me go. I know studying in IT would help me to find a job that
suitable with my physical condition”. Q.T (cerebral palsy) is very keen on learning IT
by himself as it is a way for him to keep learning and to help his neighbors. He
emphasized “Even though I was not admitted to the IT class, but I did not feel sad. I did
not really care. I focus on learning rather than thinking too much. Then I found a way
to learn from Youtube”.
Regarding positive coping, in the aftermath of trauma, illness, disability and
dysfunction, children and their families can come to new insights and develop new
abilities. As most of parents in this research expressed the hope that their children will
be able to take care of themselves in the future, they learn to adapt with their children’s
special needs such as customize daily routines, take turn to support children with self-
care, identify possible sources of support for their children. For instance, a mother of a
child with intellectual disability in Hue said “Since she was able to walk, I sent her to
kindergarten. My families said it was not wise to do so. But I did not care. I knew
sending her to class with other friends would be helpful for her development. She could
interact with others so that she could have better response and develop her cognition”.
These efforts for adaption are critical to ensure the needs of children are met which
contribute greatly to the family functioning (Heiman, 2002). More importantly, families
who are able to find solutions and mobilize supporting resources are more likely to be
more resilient than parents who are unable to do these things.
Social support: Through the focus groups, we identified that social supports and
interventions through professional resources are important factors influencing
resilience. This idea also supported by Walsh (2003) that social support is an important
adaptation and resilience resource which facilitates hope and reduce stress. We
observed that parents who received trainings and interventions on disability related
topics showed more positive attitude towards having a child with disability. They also
have stronger sense of confidence, belonging and motivation to overcome challenges in
daily life. For example, a mother in Da Nang claimed that “Thanks to the trainings on
disability I attended, I know about disability rights and how to take better care of my
son and how to raise awareness of people around on disability and explain to people

how to communicate with persons with disabilities in a respectful

45

way”. In this case, the mother demonstrated her to negotiate with others in their social
ecology for the resources they need such as safety from bullying and stigma, which is a
very important indicator for social inclusion.
4.6 Conclusion
This chapter has aimed to present influencing factors to the transitioning of YPWD from
childhood to adulthood, namely the agency of persons with disabilities, family capacity,
supporting systems and resilience of YPWD and their families. Findings indicated that
the transitioning is strongly influenced by various actors from micro level to the macro
level of the ecological system and these factors are intertwined with one another to
create a foundation for young persons to enter adulthood. We found that YPWD showed
a sign of vague understanding about adulthood as well as future orientation and many
of them expressed a sense of self-stigma. From parents’ views, there is an ambiguity
towards their children’s future, especially with regards to independence and
employment. Thus, the parents suggested that information and trainings would be very
important to equip them skills and knowledge so as to prepare for their children’s
transitioning. Similarly, local staff who are providing supporting activities to children
with disabilities and their families also finds a need to learn more about the transition
stage. The current support and interventions aims at the well-being of individuals with
disabilities in general without focus on the transitioning. Nevertheless, despite the
challenges, most of the families revealed their resilience in facing with adversity and
disability which was reflected through protective factors including family bonding,
positive coping and social support. These findings suggested there is a limited
preparation for children with disabilities going through the transition and entering the
adulthood, and more attention together with necessary resources should be made
available for YPW, families and supporting systems.

46

PART V. CONCLUSION AND RECOMMENDATIONS

5.1 Conclusion
This exploratory research, which focused attention on the daily experiences of young
persons with disabilities and influencing factors on the transition from childhood to
adulthood, has provided insight into the life of individuals with disabilities in the
modern society.
The overarching finding from this research demonstrate that YPWD face numerous
challenges during the transition to adulthood with limited support from families and
society. Moreover, most of the significant challenges come from their daily life
experiences such as limited transitional skills for young people with severe disability,
multiple forms of discrimination, barriers to social participation, which may lead to self-
stigma and exclusion from community and society. From respondents’ sharing, it can
be seen that YPWD’ daily life stories are still likely to be embedded within the medical
model that view disability as hopeless and dependence. Although the negative mindset
and discrimination toward disability has changed largely, the belief in YPWD’ strength
and capabilities is still vague and unclear. As a result, children and YPWD almost have
no orientation or preparation toward adulthood and future life.
The influencing factors to the transition from childhood to adulthood coming from
various levels. Firstly, children and YPWD and their families and community have very
limited information about the transitioning period, which create a huge gap in
awareness, knowledge and skills to encounter this particular time. Children and young
people do not think of adulthood as a progress which need preparation. Very often,
parents and caregivers react to children with disabilities’ transitioning by their own
experiences and instinct, which quite differ from children with disabilities’ experiences.
Different types of disabilities have their own unique characteristics in transition period.
Therefore, without thorough understanding about their children and their children’s
disabilities, it is very difficult for parents to manage and support children.
Secondly, parents and teachers have limited skills and knowledge in raising and
teaching children with disabilities. Particularly, parents do not know how to instruct

their children with severe disability with self-care tasks. Especially,

47

during puberty time, parents often hesitate to talk about the changes in children’s body
as well psychological – emotional changes. Parents of children with disabilities are
often very protective. Thus, they often limit their children’s participation on social
activities. However, this could result in the lack of life experiences and social
competence, which inhibit the development of transitional skills such as self-
determination skills, social/relationship skills, work-readiness skills, mobility,
communication skills, community skills, daily-living skills. In both mainstream schools
and special schools, teachers of children with special needs are not equipped with
necessary skills regarding sex education for children with disabilities, behavior
management skill. Therefore, teaching children with disabilities can bring stress for
both teachers and learners. At the same time, children may feel discouraged to
participate and continue their education.
Thirdly, although the welfare system provides basic support such as disability
allowance, free health insurance, school fee reduction and exemption, there is a gap in
support children in particular transitioning period. Most of the current intervention
focus on short-term goals without direct intervention that can prepare children to enter
adulthood.
Lastly, the theme of resilience emerged from the findings and is reflected through
YPWD and families’ stories about how they perceived life and adversity. The identified
protective factors include family bonding, positive coping and social support and
interventions assisted the families to transform from loss to opportunity, from stress to
hope and from frustration to acceptance. Thus, these are important factors to look at
disability through a different lens of strength and capabilities rather than burden and
difficulties.
In conclusion, the transition from childhood to adulthood is a very important phase in
one’s life, especially those with disabilities. The transition period needs to be
recognized and prepared so that YPWD can enter adulthood more independently and
actively. In order to create smooth and quality transition, it is important to have the joint
collaboration fostered by multiagency to clearly articulate strategies and
responsibilities. The followings section will provide implication based on the findings

of this research.

48

5.2 Recommendations
Effective transition planning is critical for young persons with disabilities to have
positive experiences and outcomes for their adulthood. Our research finding suggests
that many of the challenges during the transition phase are avoidable and the
disadvantages associated with disability can be overcome. Therefore, the research
provides some recommendations to assist stakeholders in addressing the challenges the
barrier to meaningful transition to adulthood that young persons with disabilities
experience:

- Early identification and rehabilitation
Early identification of disabilities is vital to a child’s development life chances.
Similarly, delayed interventions and rehabilitation may result in irretrievable loss of
function or ability which may harm children’s physical and cognitive development.
Therefore, children with disabilities should be receiving the interventions designed for
each child’s competence and needs as soon as possible.

- Intervention programs focus on the transitioning
Intervention programs should place a focus on capacity building for the key actors
involving in the transition to adulthood of young persons with disabilities: young
persons with disabilities, parents and caregivers, teachers and community workers.
Young persons with disabilities need to build transitional-related skills such as self-
determination skills, social/relationship skills, work-readiness skills, mobility,
communication skills, daily-living skills. Besides, sex education for young people with
physical disabilities should begin early and be made relevant to their disabling
condition. Being deprived of accurate information about sexuality and reproduction is
likely to lead to a frustrating adolescent and difficulties in adult relationship. Parents
and caregivers need to have more comprehensive understanding about their children’s
disability and better skills in guiding their children in daily tasks and social skills.
Teachers need to be equipped with knowledge and skills on teaching children with
disabilities, especially with regards to behavioral management topics.

- Family support services and family engagement
There is a need to establish a range of appropriate family support services. These

services should be provided by both mainstream and specialist services

49

and be available for all disabled children’s families, including those with complex
health needs, autistic spectrum disorders and multiple disabilities such as deaf and blind
children. Sexual health also must be discussed and the physical changes of puberty need
to be discussed between children and parents. Concerns that may be difficult or
unspoken, such as romantic relationship, physical appearance, sex and masturbation,
need to be addressed.
Parents of persons with disabilities need supports not only to be able to perform their
parent role effectively, including nurture and encourage the well-being of their children,
but also to maintain good health and relationship with other family member. Thus,
family counseling and personal counseling should be made available to provide
professional advices for families of young persons with disabilities. More importantly,
all programs and activities should involve parent participation in planned activities to
ensure sustainability.
- System linkages and multiagency collaboration
The effective transition plans need to be discussed and created with different sector such
as health, education, social protection, labour and different actors such as governments,
civil society organizations (including disabled people’s organizations), professionals,
the private sector, and persons with disabilities and their families. The supporting
system and mechanism should be augmented by identify the gaps in the systems and
provide linkages between different services and multiple agencies. These elements are
essential to enable young persons with disabilities to enter adulthood more confidently.

50

REFERENCES:

Arnett, 2000
Bagatitini, 2014
Bank et al, 2018
Bronfenbrener, U. (1979). Ecology of human development. Cambridge, MA: Havard
University Press.
Cresswell, 2011

Dorothy S. Becvar (ed.), Handbook of Family Resilience, 2013, DOI: 10.1007/978-1-

4614-3917-2. Springer Science+ Business Media New York 2013

Erikson, E.H. (1968). Identity, youth and crisis. New York: W W. Norton

Grant and Ray, 2010
GSO, 2019

ILO, 2010

ILO, 2013
ISEE, 2018
James and James, 2008
Leonard Cheshire Disability, 2017
Lynch and Pham, 2013
Meadow, 2009
Palm et al, 2015
Patton, J.R., Clark. G.M (2014). Transition Planning Inventory – Second Edition:
Administration and resource guide. Austin: Pro-Ed
Sonali Shah, 2008

UNFPA, 2011
UNICEF, 2019
United Nations, 2009
Wood D. et al. (2018) Emerging Adulthood as a Critical Stage in the Life Course. In:
Halfon N., Forrest C., Lerner R., Faustman E. (eds) Handbook of Life Course Health
Development. Springer, Cham
Young et al., 2011
Monitoring Educational Rights for Girls with Disabilities Project (MRGD). (2016).
Final report on the educational rights of girls with disabilities in Vietnamese schools.
Halifax: Mount Saint Vincent University
National Survey on Persons with Disabilities in Viet Nam, 2019
The 2012 – 2020 Project to Support Persons with Disabilities,

VAEFA, The Spotlight Report on the SDG4 Implementation in Viet
Nam, 2019

51

Domestic and International Legislation Papers
Circular 02/2019/TT-BLDTBXH
Circular No.03/2018/TT-BGDDT on Inclusive Education or Persons with Disabilities
Circular No.58/2012 on establishment and operation of Inclusive Education Resource
Centre for Persons with Disabilities
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
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
Decision No.1438/QD-TTg of October 29, 2018, approving the scheme to help children
with disabilities access community-based protection, care and education services in the
2018-2025 period
Decisions 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
Decree 136/2013/ND-CP dated October 21st 2013 of the Government regulating social
assistance policies for social protection recipients;
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;
Disability Law in Viet Nam
ILO Convention 159 on Vocational Rehabilitation and Employment for Disabled
Persons,
Law on Children, The National Assembly, 2016
National Action Plan on Rehabilitation, Ministry of Health, 2014
National Action Plan on Vocational Training, MOLISA
National Disability Action Plans 2011 – 2020, Prime Minister
The National Assembly, 2010 Law on Persons with Disabilities
The Vocational Training Law, 2006
Viet Nam National Action Plan on Disability 2006 – 2010

52

ANNEX

Consent form
Interview guides
Fieldwork photos

53