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Introduction
Kelly is a six years old girl who was born in October 2011 and is diagnosed with
Autism Spectrum Disorder (ASD). She first got enrolled in the Early Intervention
Programme (EIP) in 2017. Being the key worker of her caseload, it was important to
build a high quality professional and family partnership with her family so as to
achieve positive outcomes for Kelly in the year that she was in EIP before transiting
into a Special Education (SPED) school.

High quality professional and family partnership

A partnership can be defined by the relationship between families and professionals
who expand on each other’s knowledge and materials to make and carry out choices
that will be of an advantage to the students primarily and to the family members
and professionals secondarily (Turnbull, Turnbull, Erwin, Soodak and Shogren, 2011).
The 7 principles of partnership as mentioned by Turnbull et al. (2011) are
communication, professional competence, respect, trust, commitment, equality and
advocacy. These principles are also evident in Keen (2007) article of identifying
elements that aim to create meaningful and effective family and professional
partnerships, as well as Blue-Banning, Summers, Frankland, Louise and Beegle (2004)
6 indicators to successful partnership. By identifying and understanding these
principles, it will lead to better collaboration and relationship between the key
worker and Kelly’s family where the latter will be supported in making plans for
Kelly’s education. This will be discussed and analyzed further in the following
paragraphs.

Kelly and her family

Figure 1.1

Referring to figure 1.1, Kelly’s immediate family is made up of herself, her parents
and her younger brother. Kelly’s family is Malay by race and Muslim by religion. Kelly
comes from a low-income family and they are currently living in a 2-room flat. Kelly’s

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mother is the primary caregiver as her father works 12 hours a day (8PM to 8AM) as
a security officer in a company. Kelly’s maternal grandparents are out of the picture
as they have passed on while her paternal grandparents are not providing any form
of support due to their negativity towards Kelly’s diagnosis, which we will discuss
later on as we go further into the family subsystems of the framework.

Based on the protocol of the EIP in Kelly’s school, students were only allowed to
remain in the programme till 6 years old, following the calendar year. They had to
transit to either a mainstream primary school or SPED school in the year they turn 7
years old. As Kelly was diagnosed only when she was turning 5 years old, she had a
late enrollment into the EIP, which leaves us with only one year to work on several
aspects. For instance, building relationship with Kelly and her family; providing
knowledge on ASD; providing emotional support; professional support in making
planned decisions about the areas to work on as well as transition planning.

Family subsystems
Kelly’s parents have been married for almost 10 years now and it was only until the
fourth year into their marriage did they conceive Kelly. Both parents initially had
zero knowledge about ASD until a family friend, who happens to be a SPED teacher,
mentioned to them that Kelly was lacking in her developmental milestones as
compared to peers her age. When Kelly was first diagnosed, both parents were
devastated and this was also due to the fact that they only had support from the
hospital and the family friend. There was no support from the extended family as
Kelly’s paternal grandparents were unable to accept and refused to understand how
their grandchild has a disability. They blamed Kelly’s parents and pin pointed on their
child rearing practices that they believed had led to the disability. Kelly’s father has
henceforth cut off all connection with them. Kelly’s younger brother being a toddler
also required plenty of nurturing from the parents and therefore, it increased their
level of stress.

Kelly’s family being at the life cycle stage of ‘families with young children’ had to
work towards a balanced cohesion so as to enhance Kelly’s growth, social
communication and interaction skills as well as self-help skills (Turnbull et al., 2011).
Having only each other to count on immediately, they share a close emotional
bonding with each other. They also have great adaptability skills ever since Kelly’s
diagnosis. For instance, making changes to their daily routines so as to bring Kelly to
school everyday, meeting and working with new people, making decisions about
transition planning. It was also apparent that Kelly’s father had the primary control
over making family decisions and rules.

Steps to positive collaboration

Following the 7 principles of partnership by Turnbull et al. (2011), it is important to
firstly, build trust with the family. To be trustworthy is to be reliable in terms of
carrying out and following through what was agreed on between both parties;
ensuring that the child’s safety is well taken care of; being discrete in ensuring that
the family’s information is kept confidential and protected and to provide a sense of
assurance to the family (Blue-Banning et al., 2004). By doing so, the family function

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on education will be well taken care of considering the family’s trust in the school
system and key worker. This process would involve the parents and key worker
where the latter will be the main point of contact with the parents and be the one
conducting home visits, sending back regular updates about Kelly and helping to
relay information to the Individualized Education Plan (IEP) team.

Secondly, the need for open and honest communication; being tactful when sharing
of information; being non-judgmental when listening; being clear and free of jargon
and to have a two-way communication. Parents would feel supported through the
weekly written communication in the communication book (Porter, Georgeson,
Daniels, Martin and Feiler, 2013) where both parties are able to pen down updates
regarding the child. With an open communication, the key worker will also be able to
help parents identify financial support that they require which can be referred to
and be carried out by the social worker. The social worker will help the family in
identifying subsidies and grants for school fees upon enrolment. Additionally, key
worker can also help parents identify recreational activities that they enjoy and
create opportunities for community outing as a class so as to allow them to
experience family outing while being supported by professionals.

Thirdly, for professionals to have the adequate level of competence. This is

represented through providing an appropriate level of challenge/ education for
Kelly, sharing the knowledge with parents on what they can carry out at home and
going for professional development to be updated about current practices. Given the
expertise of the key worker and understanding of the family’s strengths, to identify
realistic and reasonable ways in helping parents to support Kelly’s self-help skills so
as to ease their level of stress in having to do everything for her. The key worker and
parents can first identify what the latter are ready to work on (e.g. dressing), then
setting a plan to agree on how often it will be carried out and setting the date for
follow up.

Fourthly, to have respect for the family (Forster and Alexander, 2013) regardless of
their cultural background by being fair, equal and non-judgmental, recognizing and
affirming their strengths. To build on the family’s self-esteem, it is crucial to
acknowledge their actions that lead to positive outcomes for Kelly. For example,
celebrating with them the little achievements that Kelly has accomplished (being
able to request for something using the communication system independently) and
praising them for putting in the effort to use the communication system with her at
home. By boosting their self-esteem, the parents would be motivated to try even
harder.

Fifthly, having the level of commitment by being dedicated and passionate in what
you do and being there for the family whenever needed and possible. This can be in
terms of providing them with that extra emotional support that families would
usually receive from extended family and friends (Forster and Alexander, 2013) and
connecting them to the various network/ professionals when in need (Jung, 2010).
Emotional support can be in the form of having informal conversations with the
family; understanding the family and seeing Kelly through their eyes; acknowledging

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and responding to their feelings (McWilliam, 2010).

Last but not least, ensuring that there is equality in terms of power and sharing of
opinions as they would help in empowering the parents in gaining the sense of
control and knowing what to do (Dunst and Dempsey, 2007). This is in conjunction
with advocacy where parents who are empowered would be encouraged to share
their thoughts on what they think will work best for their child and work towards
these goals by reaching out to the professionals or community.

Desired outcomes
Given that the EIP that Kelly is attending is working towards family-centred practice
and transdisciplinary approach, it is with hope that the family and professionals will
be able to better collaborate in integrating intervention into the family’s daily
routines and natural environment. Family-centred service is one of the four models
of family-professional partnerships and there are two constants revolving around it,
namely – family choice and a family strengths perspective. The family choice
element of family-centred service is that the family will be the ultimate decision
maker in regards to matters concerning the child or family. The family strengths
perspective is the belief that the family has the strengths (i.e. knowledge and
abilities) to solve the problems around them (Turnbull, Turbiville and Turnbull,
2000).

In order for Kelly’s family to do so, it is the professional’s job to provide information
and advice from different resources so as to build on their current knowledge and to
also explore the different options with them before they make the decision on what
is important and of top priority to them (Forster and Alexander, 2013). Moreover, it
requires the professional’s help to identify the family’s strengths such as their
capabilities; resilience and values that they live by and to use them to make
decisions about Kelly. When these are put into place, the family will be able to
participate in setting goals and carrying out home intervention for Kelly.

Another outcome to be achieved would be for the family and professionals to move
towards the power-through partnership where both parties are interacting and
cooperating together to produce a combined effort to achieve the goals set
(Turnbull, Turbiville and Turnbull, 2000). The current partnership that they are in is
power-with where professionals have some power to decide what are the areas to
target on and how to target them by collaborating with the families through
information sharing. However, in order to achieve power-through partnership, both
family and professionals will have to be receptive, cooperative and be able to see
the bigger picture of things, that is, achieving positive outcomes for the child with
disability. The family should also be able to advocate for Kelly to be seen for who she
is rather than for what she has.

Lastly, to have professionals to empower the family with necessary skills to engage
Kelly in meaningful activities and learning when they are at home. In order to do so,
professionals should have a clear understanding of the family routines and schedules
so as to work around it to minimize their stress level in having to do additional tasks.

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After discussing with the professionals, the family would have identified a skill that is
of high priority (i.e. getting Kelly toilet trained) currently. Suggestions on how the
family can then carry out toilet training with Kelly during their daily routines will be
shared. For example, to start small by removing Kelly’s diapers for 2 hours a day,
during the period when the parents are not doing anything in particular and bringing
her to the toilet at every 15 minutes interval. It is important for the parents to be
involved in addressing Kelly’s self-help skills as her level of dependence will
determine their level of stress.

Reflection
The very first challenge faced while working on this case study is on providing
emotional support to the family without being too invasive or lacking at the same
time. When a key worker receives her caseload, her very first instinct will be to
provide parents with information on what can be done to improve the quality of life
for their child with disability. The difficulty often faced is the identification and
understanding of the family’s current emotional stage that is for instance, being in
shock or being depressed about their child’s disability. Kelly’s parents were both at
different stages of coping where her mother was depressed about Kelly’s condition
while her father was ready to participate in the school’s intervention but was only
able to commit to a certain degree due to work. With these varying factors, it was
apparent that Kelly’s mother needed more emotional support in terms of helping
her understand what the disability is about; how we can work together to improve
the quality of their lives and helping her identify her own strengths as well as the
family’s strengths. It is henceforth, especially important to understand the family
characteristics, build strong relationship with them and to acknowledge their
emotions instead of trying to fix it.

Other areas of challenge include the involuntary build up of over-reliance on the

professionals and difficulty in setting the professional boundary between both
parties. As Kelly’s family was receiving limited support from the hospital and family
friend, they often approached the key worker when it comes to making decision for
Kelly. For example, on which school Kelly should transit to when she turns 7 years
old or what they should discuss with Kelly’s pediatrician about when going for the
yearly check up. It would have been easy to provide all the information that the
family needed but this would only lead to their dependence on the professional.
Therefore, instead of creating learned helplessness in families, they should be
empowered to take responsibilities in making decision for their child. This can be
done through opportunities created by professionals for parents to identify their
capabilities and strengths to advocate for what is best for their child. Professionals
should also set clear expectations and rules with the parents at the beginning so as
to maintain the professional boundary to prevent over-reliance.

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References
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