Collaborative Governance Based Protection for HIV/AIDS (ADHA)
Infected Kids in Surakarta
Puput Putri Setyowati and Rina Herlina Haryanti
Universitas Sebelas Maret Surakarta, Surakarta, Indonesia
Keywords: Children, HIV/AIDS, Protection, Collaborative.
Abstract: HIV/AIDS disease is not only occurs in adults, but also affected with children. In generally children who
affected by it be orphan, they lost their parents because this disease and walfare less. Children who affected
by it has discrimination treatment from education and health services. To improve quality of children and
family’s welfare can be done by collaborative and coordination with another sector. This article will
discuss Children HIV/AIDS’s Protection Based on Collaborative Governance in Surakarta. This research
was conducted with method qualitative analysis. Data obtained through interviews, observation, and
document. This research choose Yayasan Lentera Surakarta as the subject, because itself non governments
(LSM) in Surakarta whom take care children with HIV/AIDS’s unattached. Children’s who live in Yayasan
Lentera Surakarta still get discrimination treatment from education and health services. The existence of
Yayasan Lentera has rejection from society because negative stigamation of this disease does exist.
Yayasan Lentera has lack of resources (economy and human) to take care children HIV/AIDS’s protection.
Regulation of Perda Surakarta about children’s protection has no responsive to Children with HIV/AIDS.
The collaboration exists to provide protection for the children in Lentera Foundation is not effective yet
because there are succeeding elements which are not fulfilled.
1 INTRODUCTION
One third from the total amount of our citizens is
children. Children are an inseparable part of the
human’s and country’s life line (Rosalin, 2015).
Currently there are still some children getting
discriminated from their own family and surrounding,
for example the discrimination received by the
children suffering from HIV/AIDS (ADHA). Their
access to education and health services becomes
limited due to that discrimination (Unicef, 2012). The
nature of discrimination is the unfair and imbalance
treatment done to differentiate someone or a certain
group which is usually categorical or based on
specified attributes, such as race, ethnicity, religion,
or membership of social classes.
Children suffering from HIV are kids and
teenagers under 18 years old who live with HIV
(infected by HIV), have lost one or both of their
parents due to AIDS and are prone to welfare and
development because of HIV (Unicef, 2007)
Most of our people still perceive that people
suffering from HIV/AIDS are the people who suffer
a disgusting disease; these negative perceptions tend
to be close to them. In other words, their existence is
not wanted in the social environment, even those
people often get discriminated (Niko, 2014). Human
Immunodeficiency Virus (HIV) has infected millions
of people in the world. This virus lowers the
immunity of the infected person. When one’s
immunity decreases, that person will be prone to be
infected by other diseases (opportunistic infection),
this condition is called as AIDS (Acquired Immuno
Deficiency Syndrome) phase (WHO, 2013).
Surakarta government has seriously worked hard
in response to the issues of children protection, but
there are still many obstacles to be taken care in the
future, which is the existence of Non-Governance
Lentera Foundation Surakarta taking care of 11
ADHA that must strive because it gets rejection from
the surrounding environment (Unicef, 2017). Lentera
Foundation has many assisting programs toward
ODH; one of them is the care and support for the
children suffering from HIV/AIDS (ADHA). Lentera
Foundation was used to be located in Kartosuro,
Sukoharjo, but must be moved to Bhumi Laweyan
because the people there did not want to welcome the
ADHA (Susanto, 2016). The vice mayor of Solo had
290
Setyowati, P. and Haryanti, R.
Collaborative Governance Based Protection for HIV/AIDS (ADHA) Infected Kids in Surakarta.
In Proceedings of the 2nd International Conference on Sociology Education (ICSE 2017) - Volume 1, pages 290-295
ISBN: 978-989-758-316-2
Copyright © 2018 by SCITEPRESS – Science and Technology Publications, Lda. All rights reserved

given assistance in the search of shelter location, but
it always ended with the rejection from the local
residents. Besides getting rejections from the people,
ADHA also had ever gotten rejection from the health
services and education access. There was an ADHA
who also had to be expelled from the school because
he / she suffered from HIV and there was an ADHA
who got rejected by the hospital because of the reason
that there were no medical staffs that could handle
HIV/AIDS issues (Oktaviani, 2017).
Surakarta government has local regulation of Solo
No.12 in 2014 about the prevention and treatment of
HIV/AIDS, in that regulation it is explained that the
people must accept the existence of ADHA (People
with HIV/AIDS) and not to do discriminations and
also must create a conducive environment for ODHA,
ADHA, and their families. The local government is
also obligated to provide health service access for
ADHA according to their needs. In providing the
health services to ADHA there has to be no
stigmatizations nor discriminations, besides that
ADHA have the right to receive comprehensive
health services, the grant of children’s right, and basic
life needs support.
Besides health services, ADHA also have the right
to receive equal education and tutor without any
discriminations. Through major rules No. 28-D in
2014 about Children-Friendly School, ADHA have
the right to education and tutor according to their own
intelligence, talent, and interest without being
discriminated. In the management of children-
friendly school organization, it must also give special
protections to the children with HIV/AIDS.
The Intermediate Phase of Local Construction
Plan (RPJMD) of Surakarta in the year of 2016-2021
it is explained that in order to improve the life quality
of children and family welfare, cross-sectoral
collaboration and coordination are needed to be
involved. It is not impossible that the government has
limits in providing the protection rights to the ADHA,
so in order to optimize their performance,
collaborative governance might be done.
The importances of commencing this
collaboration are: (1) the failure in implementing the
regulations at the field, (2) the groups’ inability
especially in separating the powerful regimes to use
the other institution arenas to slow down the decision,
(3) the mobilization of importance groups, and (4) the
high cost and regulation politicization (Ansell, 2009).
This research is important to be carried out in order to
investigate the form of collaborative governance in
giving protections to the ADHA. That is why the
writer is interested in making the title “The
Collaborative Governance-based Protection of
Children with HIV/AIDS (ADHA) in Surakarta”.
2 LITERATURE REVIEW
According to De Seve in (Sudarmo, 2009) there are 8
elements contributing to the success of collaborative
governance, they are:
1. Networked structure
The network must not form authorization
hierarchy, domination, and monopoly because it
will not be effective. Everything must be in
balance whether in right, obligation,
responsibility, authority, and chance.
2. Commitment to common purpose
The reason why a network must be exist is
because the attention and commitment to
achieve the positive objectives. It is usually
articulated in the common mission of a
governmental organization.
3. Trust among the participants
The belief that the participants trust to the
informations from the other stakeholders in a
network to achieve the goal
4. Governance
a. Boundary and exclusivity, emphasizing
who the members are
b. Rules, the limitation of the members’
behavior there is a clear rule about what
have to be done.
c. Self-determination, freedom to anyone
who is allowed to operate.
d. Network management, in relation to the
rejection resolution, resources allocation,
quality control, and organization
maintenance.
5. Access to authority
It is about the availability of the clear procedural
term standards which are widely accepted.
6. Distributive accountability
Sharing in terms of structuring, execution, and
management together with the other
stakeholders and sharing some decision
makings to the whole members of the network
so that the responsibility sharing in order to
achieve the expected results.
7. Information sharing
It is about the easy access which includes
system, software, and the convenient and secure
procedure to access the information for the
members.
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291

8. Access to resources
It is the availability of the financial, technical,
human, and other resources which are needed
for the network goals.
3 METHODS
This research is a descriptive qualitative research.
The data were gathered through interview with Mr.
Puger Mulyono (the founder of Lentera Foundation),
Mr. Yudi (the caretaker of lentera foundation), the
chairman of Solo social department, and local
residents; and documentation study. The data analysis
was done by collecting data, reducing, serving, and
inferring conclusion. The data validity was done by
using the triangulation technique which is checking
the data gathered through the interview, and then
checking it by using observation and documentation.
Lentera Foundation Surakarta was chosen with
the consideration that the foundation is a non-
governance institution in Surakarta that takes care of
children with HIV/AIDS and also the pilot project in
Indonesia and an independent one (it does not rely on
the government and already has a law protection).
4 DISCUSSION
4.1 Lentera Foundation
Lentera Foundation was built by Mr. Puger because
of his humanity feelings that made him want to help
the people in need, especially the children suffering
HIV/AIDS who are abandoned by their parents /
families. Currently the number of HIV infected
children in Lentera Foundation is 12, with the ages
ranging from 2 months – 14 years old, accompanied
with 4 nursemaids. Up to now only the Surakarta
Social Department that builds a relationship with the
Lentera Foundation. The protections given to the
children with HIV/AIDS (ADHA) in Lentera
Foundation are.
4.1.1 Social Sector
Lentera Foundation has owned a shelter even though
the building status is still renting with a small size, so
that the children cannot play freely. Actually the
children are given freedom to socialize with the other,
but they play and socialize more with their friends in
the Lentera Foundation. The local residents have
understood about the HIV/AIDS theoretically
because they have been accustomed to the
socialization program from the government, but if
they meet or interact directly with the people infected
with HIV/AIDS still feel disgusted. In giving the
protections to the HIV infected children in Lentera
Foundation, the social department has the main
contribution which is giving the shelter to the Lentera
Foundation and giving reference to the ADHA who
will visit the hospital. However, up to this point the
social department has not given the shelter yet. That
is not yet realized because there is still a rejection
conflict from the local residents and also it is not
possible to build a shelter because the free land in
Solo is limited.
4.1.2 Education Sector
Children with HIV/AIDS in Lentera Foundation
Surakarta get the education access in the form of
going to school formally, but the status of that child
must be hidden because if the school side or the
parents finds out, that child will be discriminated even
there will be a rejection that causes the child dropped
out from the school. The regulation product possessed
by the Education Department is Major Rule No. 28-
D in 2014. Every time there is a problem about
ADHA education in Lentera Foundation is taken care
by Mr. Puger himself. There is no response from the
education department to take care about the education
problem undergone by ADHA. Whenever there is an
ADHA dropped out from his/her school, Mr. Puger
himself takes care of it and looks for the substitute
school. Every child with HIV has a Smart Indonesia
card, that card is useful for giving dispensation of
education fee.
4.1.3 Health Sector
Children suffering from HIV are prone to other
diseases because their immunity is decreased. Due to
the limited money, the medical treatments to the
ADHA are done traditionally, if the situation has
become severe so that they have to be referred to the
hospital through the social department. There are also
some medical staffs who are inexperienced in
handling ADHA. There are also some
doctors/medical staffs who feel disgusted with those
children. There is no supports from the health
department in the form of neither supplements nor
vitamins. The health department conceives that it
should be the responsibility from the social
department, because it concerns about the children
welfare. The health department of Surakarta has a
regulation product which is the Local Regulation of
Surakarta No.12 in 2014 about the Prevention and
Treatment of HIV/AIDS. In that regulation, it is not
mentioned specifically about the treatment,
medication, and rehabilitation for ADHA.
ICSE 2017 - 2nd International Conference on Sociology Education
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Succeeding elements of collaborative
governance done between the social department and
Lentera Foundation:
1. Networked structure
According to Jones (in Sudarmo, 2011), network
must not form hierarchy because it will not be
effective and the network structure must be
organized and as even as possible which is there
is no authority hierarchy, domination, and
monopoly, everything must be equivalent in terms
of obligation, responsibility, authority, and
chance for the sake of the main goals. Between the
Lentera Foundation and Social Department, there
is no hierarchy formed. There is no stages that
identifies Social Department is higher than
Lentera Foundation and vice versa. Each of them
has its own responsibility and chance to make
decision.
Theoretically the requirements of the
successful collaboration between the Social
Department and Lentera Foundation according to
the Networked Structure have been fulfilled.
However, the problem is that there is still a lack
of commitment from the members proven in
Table 1. More discussions will be continued in the
following element.
2. Commitment to common purpose
The commitment of each institution is different
from one stakeholder and the others. The form of
the commitment of Surakarta Government is
giving protection to the children which is listed in
RPJMD and the regulation products existed. In the
Intermediate Phase of Local Construction Plan of
Surakarta in the year of 2016-2021 “to improve
the family welfare it is needed to involve the
cross-sectoral collaboration and coordination”.
One of the regulation products is the Local
Regulation of Surakarta No 4 2012 about Children
Protection.
There is still a lack of commitment of the
Social Department members in searching for
shelter for Lentera Foundation. The shelter issue
has not been realized because there is a rejection
from the local residents who disagree if there are
ADHA in their environment. It causes the Lentera
Foundation do not believe the enticements from
the Social Department in relation to the shelter
issue.
The most crucial department that has to give
protection to the children is the PP PA and PM
Department. The children protection department
has the responsibility in arranging the policy
about the children protection and welfare,
however up to this point the policy product of the
Local Regulation of Surakarta No 4 2012 about
Children Protection made by Surakarta Children
Protection Department has not responded the
needs of the HIV/AIDS infected children.
From the facts above, it can be concluded that
the commitment toward the shelter provision to
the children with HIV/AIDS (ADHA) really
varies, even there is a party who only contributes
in the form of regulation. Statements from the
Lentera Foundation that disbelieved the Social
Department promise in providing shelter will be
discussed in the following section.
3. Trust among participants
It is the belief that the participants entrusted to the
information or efforts from the other stakeholders
in a network to achieve the union’s goals
(Sudarmo,2011). It means that each stakeholder in
a network must trust each other. Surakarta
Government has promised to provide shelter for
Lentera Foundation, however that it has not been
granted up to this point, if in the end of 2017
Surakarta Government has not granted the shelter
facilities, Lentera Foundation will demand back
Surakarta Government’s promise.
According to Mr.Puger’s statement, that issue
is just Surakarta Government’s gimmick, because
at that time there was an evaluation of Children-
Friendly City, so that many political elements put
in order to make Surakarta look good in handling
children protection. That thing causes Lentera
Foundation distrust Surakarta Government. If
there is no more trusts between work partners, it
is proven that in the matter of collaboration is
already in the edge of ending point. (Huxham,
1996) states that trust and respect is important if
collaboration is to be successful and enjoyable
and communication and trust very important are
typical and indicate that the existence of trust
between the parties involved is seen as an
important success factor.
4. Governance
In the boundary point of view, there is no clarity
about who the members of the collaboration are.
In the rules point of view, there are no rules or
MoU that regulates the collaboration between the
Social Department and Lentera Foundation. Both
of them collaborate because it is based on their
responsibility in carrying out their job. Surakarta
Social Department has the responsibility to
guarantee PMKS welfare, while Lentera
Foundation has the responsibility to take care of
ADHA. This collaboration is free and flexible. In
the matter of network management, this
collaboration is still having conflict which is the
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293

department’s responsibility that is handing over
about the AIDS issues. One day Lentera
Foundation was asked to take care of an AIDS
infected woman from the Social Department, but
Lentera Foundation rejected the request because
they only take care of children infected with
HIV/AIDS, their financial resources were also
low.
5. Access to authority
Access to authority is the availability of the clear
procedural term standards which are widely
accepted, but the collaboration made between the
network currently does not have any clear
regulations (SOP).
6. Distributive accountability
If the members do not want to be involved in the
network / collaboration goal making and do not
want to bring their resources or authority into the
network, there will be a probability that the
network will fail to achieve its goals (Sudarmo,
2011). That is why collaboration is needed
between institutions to make it come true. Each of
the department has a different responsibility. The
responsibility upon the protection of the children
with HIV/AIDS (ADHA) in Lentera Foundation
is an important thing to be done. However, the fact
that the Health Department who is in charge in
giving health services has not given the resources
possessed. It is proven that the supplements and
vitamins logistics are still Lentera Foundation’s
burden.
Lentera Foundation has several human
resources but they are not involved enough in
policy/regulation making. The impact is that the
current regulation/policy still does not respond the
ADHA needs. In the end, every policy made
affects the future of the children with HIV.
7. Information sharing
Lentera Foundation has a difficulty in accessing
information about children. For example Lentera
Foundation does not get the explanation from the
Social Department about the reason why they still
do not get promised shelter, whereas the social
department previously stated that Lentera
Foundation will get a shelter in an ex local
government clinic in Setabelan. That thing was
stated when there was a visit from the Indonesian
PP PA Ministry to Solo. However, after the visit
was over, the shelter was not given to Lentera
Foundation. From the statement above, it is
emphasized that it is still hard to access
information between Social Department and
Lentera Foundation.
8. Access to resources
Every form of treatment and medication of
ADHA is paid by using personal money of Mr.
Puger that is obtained through the result of his
work as a park man in Indosat Purwosari. Besides
that, there is also a grant from the Vice Major of
Surakarta for each ADHA 2.000 rupiahs every
day. That money is just enough for eating, while
it is not enough to pay the treatment fee. To
increase the living money for the ADHA, Mr.
Puger has already tried to submit a request
proposal in Solo Peduli, but it was rejected
without any reasons. Surakarta Lentera
Foundation also does not get any supports from
the Surakarta APBD estimation for the treatment
fee of ADHA. So that in this case, Lentera
Foundation needs an abundant financial resource,
because the needs of HIV infected children are
different from the normal ones. They need
supplements, ARV medicines, and therapy. The
availability of the economic resources become the
collaboration problem in providing protection for
ADHA.
5 CONCLUSIONS
The collaboration exists to provide protection for the
children with HIV/AIDS (ADHA) in Lentera
Foundation is not effective yet because there are
succeeding elements which are not fulfilled which is
commitment implementation, the lack of trust
between networks, the unfulfilled governance factor,
no procedure in collaboration implementation, no
responsibility division between networks, a difficulty
in accessing information, and also limited economic
resources especially finance to pay the treatment and
medication for ADHA.
Children with HIV/AIDS (ADHA) have received
their protection rights in matter of health sector which
is treatment and medication; education sector which
is attending formal school even though their status is
hidden; social sector which is protected from
discrimination and freedom of socializing with other
people; regulation sector which is proven with major
rules No. 28-D in 2014 about Children-Friendly
School and local regulation of Solo No.12 in 2014
about the prevention and treatment of HIV/AIDS, but
there is still a lack in Surakarta local regulation of
children protection which has not explained the
special protections for ADHA.
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