THE INCREASING MODEL OF FAMILY ’ S SOCIAL SUPPORT AND CHILDREN WITH DISABILITY ’ S ENVIRONMENT

Social support from family and the environment is one of the important variables that can support the development of children with disabilities. The purposes of the research are to know, understand and analyze; (1) social support received by children with disabilities from the family and the children’s environment before the implementation of the model; (2) design and implementation of the family and environmental social support development model; (3) social support received by children with disabilities from the family and the children’s environment after the implementation of the model. This action research has involved 21 informants, consists of eight mothers, three fathers, eight children, one aunt and one grandmother. Data collection techniques are through in-depth interviews, focus group discussions, participatory observations and documentation studies. The research results show that social support before the implementation of model from family and the environment already exists but still very minimum. After implementation of the model, social support from the family increased in all aspects.The process of action research involved the active participation of informants to engage in social support development models through social work activities at micro, mezzo and macro level. Indonesia which is a social capital model in the form of strong sense of kinship. Especially for Sundanese who have the motto of “silih asah silih asih silih asuh” meaning to drill, love and care each other in the community. This social model shows the existence of mutual education, mutual love, mutual help and love among fellow societies, so that became the basis for development of the model. This study showed that by involving the family and the environment directly in the development model, the result is an optimalization social support system that can be provided to the children with disabilities.


Introduction
Children with disabilities both caused either from birth or accident and illness, they always have to meet various problems.On the other hand, the child must accept and adapt to his/ her condition of disability, and on the other hand, they must face the reaction of his/her environment.The national survey (Susenas) in 2012 released data that the number of people with disabilities is 2.45% of the total population, the number of child with disability is still high 0.77% or 1.848.000people.Children with disabilities need social support from family and environment to cope with the various problems.Social support from family and children's environment can be an important factor for children with disabilities.Parent support is the strongest predictor of all symptoms of mental health (Campbell & Gillmore, 2014).Family support and people around is a support system that can reduce the risk of depression and pressure in people with physical disabilities (Turner & Noh, 1998).Social support can improve the self-acceptence of adolescents with physical disabilities (Sutjihati, 2012).The situation can be understood because the social environment that provides support for children with disabilities will provide a conducive atmosphere, so the children feel accepted and also assisted, this condition will be good for the development of children with disabilities.Building environmental support for children with disabilities through an activity that involves the active participation of families and communities can enable the building of social support for disability children.
The purposes of the research are to know social support received by children with disabilities from the family and the children's environment and try to design and implement the family and environment social support development model.
Family as the nearest environment becomes an important part that can provide social support to children with disabilities.The importance of family social support for children with disabilities proposed by Sutjihati (2012), father, mother and family are the first and the closest environment that can be a natural source of support for children with disabilities.The strong influence of social support according to Siegel because of social support makes one feel loved, cherished and valuable (Siegel in Taylor, 1999).Social support becomes the basic necessity for those which can provide physical and psychological comfort (Thoits in Rutter, 1993).Family and environmental support is a support system that can reduce the risk of depression and pressure in people with physical disabilities (Turner & Noh, 1988).
The family holds a central role in achieving abilility of activity of daily living (ADL) of children with disability.
The problem is when family as the nearest environment for children with disabilities sometimes can't always give positive support for various reasons.The father and mother showed different reactions and attitudes to accept their child with disability (Greenspan and Wieder, 1998).Their reactions, such as: sad, disappointed, embarrassed and unable to accept reality, causing child with disability to be untreated well.The case of the father mother who hide his/her child because offeeling shame and then forbade his/her child with disability to go out from the house.Another reaction is the father and mother feelguilty, so they always worried and become over protective, then the child activities are limited.This family condition makes children with disabilities become powerless, they are difficult to be independent.In accordance with the above circumstances, Rothman (2003) stated that "no matter how the reactions and attitudes of the family, they really can be a source of difficulty and pressure for a child with disability".
The condition of child with disability also often causes other problems to the family.Research Every Child (2001) found that in some cases having a child with disability can be a burden for the father and mother, care giver and other family members.Similarly, other family members such as siblings or relatives who can not accept the condition of disability, showing a refusal attitude in subtle or blatant manner.Children who feel rejected can feel frustrated and lose confidence.The condition of disabilities children getting worse because they are not only dealing with disabilities condition but also environment that does not support (Frizgerald, Mc Michael in Somantri, 2007).On the other hand in families who accept their disabled child, the father and mother need emotional adjustment because their child is much different from what is expected (Pain, 1999).Father and mother should also be able to understand the needs of their disabled child.According to Hanvey (2001), "to know and meet the needs of disabled child is often very difficult for parents which beyond their abilities".
Viewing the environmental conditions, it is not always conducive to accept the presence of children with disabilities.Marchant (2001) points out that, "child with disability is often marginalized and separated from the community during in time for fun, education, and opportunity compared to what other normal children can get".Children with disabilities are separate from their peer group in the community (O'Loughlin, 2008). Research Every Child (2001) found that children with disabilities often face bad stigma and social marginalization.
The number of families who have children with disabilities in the low economy level community is still-high in Indonesia force the parents orientation more important to fulfill family survival.Fulfill the needs of their disabled children is minimum due to the limited financial resources.The stigma of society toward children with disability is still strong in this society because of the minimum knowledge of most citizens and socio-cultural factors (Byrne, 2002).Not all father/mother of children with disabilities have adequate psychological and material abilities to ensure the fulfillment of the needs and rights of children with disabilities.It is still in the high level, where father and mother economically and psychological are unable to meet the needs of their disabled children, so that many disability children are neclegted (Harry Hikmat, 2010).
The research was conducted in rural or suburban areas in Bandung regency.Suburb of Bandung was chosen because the region has a high number of children with disabilities.According to WHO in Paper Guidance Note Disability Emergency Risk Management (2013) for the size of an area its called as emergency disability, if the persons with disabilities in villages amount to a minimum of 37 persons.Result of the latest data collection of Social Service of Population and Civil Registry of Bandung Regency in 2012, children with disabilities 0 -18 years amounted to 1911 people.Data of Bandung Regency shows the level of economic power of the population mostly at medium to low level, so that main orientation is family survival.The results of the assessment in the field indicated that the stigma still exists so the families feel ashamed to have children with disabilities and do not allow their children to go out from the house.However, family culture is still strong in the suburb, contrast to the urban community.The situation of such communities can still widely found in other parts of Indonesia, so this research becomes important to provide informations and solutions in increasing the support of families and the environment against children with disabilities.
The profession of social work focuses to improve social functioning, this study is focused on how family can build their functioning to provide social support so that it can have positive implications for the development of children with disabilities.Social support from family and child's environment is in harmony with individual principles in their environment or in their situation (Person In Environment or Person in Situation -PIE) in social work (Zastrow, 2004;DuBois, 2005).This principle emphasizes that the individual never can be separated from the surrounding environment that influences it.The problems of children with disabilities can not be seen as only individual problems, because children are always related to the influence of their environment.Indonesia with the cultural heritage of mutual assistance or the habit of mutual help and a sense of kinship is also strong enough to be an interesting study.How the value of such culture can be developed so that the environment can be the source system of support that needed by the disabled children.Based on the background, the research problem is how the social support received by children with disabilities from the family and environment, and how to develop and implement the social support model

Method
This research uses qualitative approach with action research method.Action research aims to give positive implication for research target that is to increase social support of family and environment of children with disabilities.This research was conducted in July 2014 -September 2015.The informants of this research are 21 peoples as sources of data.It consists of eight mothers, three fathers, eight children with disabilities, one grandmother and one aunt.Children with disabilities as informants have the following criteria: 1) Aged between 6 -18 years (starting at age 6 to be able communicate actively).2) Children with physical/body disability (body impaired), children with visual disability (visually impaired), children with speech disabilities (speech and hearing impaired).3) The degree of disability from mild to severe for children with disabilities who are blind and speech impaired except for a child with a physical disability (body impaired) from the mild to moderate disability category, not including the severe category (can't wake up, stay in bed).This initial condition is in line with the research of Obrien (1993) who expressed the lack of social support from the family because of the saturation of the spouse or family facing prolonged disabilities from family members.The difference with this research is the lack of social support due to the inability of the family's economic aspects and the lack of capacity of family knowledge and skills in caring children with disabilities, as well as the lack of support from the family's social environment.
In the low capacity of the parent's in the care of children with disability can be seen from the characteristics of parental informants as follows.
3) Dependability, and 4) Confirmability, the model has been presented at a seminar that organized by Unicef"International Conference Child Poverty and Social Protection" in year 2014.
Data analysis used qualitative data analysis that is content analysis which refers to Harold D. Laswell in Mayring (2004) analysis by making conclusion with definite knowing of the themes, the proposed patterns or presented by informant, then compile and analyze it objective, systematic and generalist manner.
The data analysis step refers to the opinion of Miles & Huberman (1992) in Sugiyono ( 2005) encompass of steps 1) Data Collection, 2) Data Reduction, 3) Data Presentation, 4) Withdrawal conclusion/verification. Framework of action research network described in Figure 1.The implementation of the model is done through a strategy that leads to the process of social work intervention through problem solving approach, as well as action

Implementation Model
Implementation of actions at micro scope Implementation at micro scope is addressed to family or caregiver.Based on the assessment, it is known that parents, especially some mothers, experience some psychological distress such as regret, unclear annoyance and stress in daily parenting.Counseling is given to the mother to solve her psychological problems and all the caregivers provided the improvement of childcare capacity (parenting skills).
The improvement of caring of child with disability (parenting skills), as an educational activity aim to improve parents' knowledge and skills in caring of children with disabilities.Father is also a target so that it is expected to eliminate the pattern of caring that is responsibility of mother.Educational activities carried out also contained social support enhancement materials that carried out repeatedly to the father and mother, so families have a theoretical understanding and practice in providing social support.The techniques used are lecture, question and answer discussion and simulation.Education is given with easy to-understand material, giving the ways that can be done by parents in providing social support to their child with disabilty, so it is created" optimal matching of social support".According to Stan Houston and Pat Dolan (2008)   b.There seems to be a significant change at the aspect of information support, the mother is more active to provide direction, advice or guidance to all children.Mothers also teach attitude and behavior and getting better to be able teach Activity Daily Living (ADL) to children, because of understanding of parenting skills through education.
Another family member that is father has started to be involved to provide advice or guidance to the child, as well as the brother has started to invite his siblings who suffer from disability to play together.
c.The aspect of emotional support also shows a better change.Before, only a few mother who often invite children to talk about daily activities, praise the child or entertain children.Emotional support after the model performed by all mothers.Mothers often invite children to chat about the daily activities of children.Mothers give words of praise, entertainment to children, although there are still without touching or caressing the child, especially for mothers to their boys.Nevertheless the whole mothers have been able to express a warm emotion to the child.Similarly, father has been able to express love to the child by inviting child to chat after the father came home from the work.
d. Social support on the child's selfesteem shows a better change.Before the implementation of the model, some mothers praise children when children do good behavior and mothers do not distinguish children.After the application of the model, the mother becomes accustomed to praise the child, when the child does a positive or good activity such as learning, bathing, cleaning up the textbook composition.Mother does not offend the child by not issuing bad words, such as telling a nag, a naughty child or a spoiled child.Mothers are also better understanding the words of the child, by listening and responding when the child speaks.The father of one of the children who had previously said that could offend a child like "siboyot" or a very slow walk.After the implementation of the model, father no longer labelling his child like that, father even participate praise the child when the child showed good behavior.
e.In the aspect of support from social groups, mothers state that the environment is more comfortable because neighbors no longer wonder about their disabled child.There are even some neighbors helped oversee their children when playing outside the home.Changes are also showed from the support of the environment especially the increasing support from community leaders, such as: reading alqur'an teachers, village officials, cadres often ask news and invite them to chat.Neighbors often greet the children if they meet, or invite children to play.Other community leaders, such as community social workers, are more active doing home visit and provide motivational support to children and families.
Based on the results of the research that has been described, changes in the target goals thatis family and environment before and after the implementation of the model, can be seen in the following box: The increasing of the social support father, mother and the environment of surrounding children can be explained in the following discussion: a.As a result of the influence of social work intervention that integrative in the scope of micro, mezzo and macro.Intervention in three scopes is based on the concept of the individual in the environment (person in environment or person in situation -PIE) (Zastrow, 2004, DuBois, 2005), so that it is not aimed at a single scope, because the individual whether directly or indirectly will be affected by the micro, mezzo and macro system.Social work perceives the individual is inseparable from the environment or the circumstances surrounding him.The concept of PIE also confirms that the environment influences individual attitudes and behavior, and social work practices arerelate directly to increased interaction between clients and systems (Zastrow, 2004).The system theory approach and the PIE concept, explain how the environment can have a strong influence toward the child with disability by changing attitudes and behaviors of the family as well as the environment.
b.The changing of all aspects of social support other than because involvement of outsider that is the researcher himself in the intervention activities, in accordance with the findings of Davis and Susana research (2009), suggesting that professional support become predictor number one that strengthens families, because professionals understand the appropriate attitudes and behaviors for increasing the family capacity building.Support from other parties is from local community leaders such as community social workers, female cadres, religious leaders and village leader.This condition is in accordance with the system theory review that individuals are always in interaction with the various systems of their environment (Beckett & Johnson, 1995;Ashman, 2000;Zastrow, 2004), and the environment which gave the support according to Turner and Noh (1988) can reduce the risk of moodiness and pressure on people with disabilities and their families.
c. Increased support also comes from fellow mothers themselves who are members of a self-help group.This activity is in line with World Bank (2001) research results that professional support is important, but the relief or support aspects from other families with similar problems are great value.The formation of support groups were based on Garvin's (1987) stated that support groups could play an important role.According to Katz and Bender in Garvin (1987), the group is usually formed by peers who come together to help each other meet the same need, cope with lifethreatening problems, as well as trying to bring about the desired changes.
After the implementation of the model, it appears that the self-help group is working well enough.Mothers who feel the same fate have children with disabilities feel the support of friends who share their psychological state.The results of the research are in accordance with World Bank (2001) research which states that parenting skills and also the use of experience from peer education, or target groups are very useful tools.Group support improves the psychological stability of the mother, allows the mother to display comfortable parenting for the child, with the intimacy and affection that the child can feel.
d.Besides involving other members, this model requires the involvement of father in providing support for their children.
This situation is rather difficult to apply in the research area because the local culture places the father as the main breadwinner and mother as caretaker or nanny/ babysitter.On the other hand,patriarchi culture is still strong enough, male or father more dominant so that mother difficult to ask father help to take care of child.This condition also causes the father becomes difficult to be involved in the activity of the built model.The researcher's effort to involve the father is conduct through an individual approach, come to the father individually to invite him to speak in a relaxed atmosphere while giving the material about good parenting.The strategy used does not require the father to nurture or educate children intensively, but the social support that displayed by the father is more to the expression that the father shows to the child to indicate that the child feels cared for, valued, appreciated and loved.Father's social support is enough to invite children to talk or tell stories, give advice or praise the child occasionally.

Conclusion
Based on the assessment results, it is found that family social support, especially mother, has already existed in their disabled children, but it is still minimum in every aspect.Lack of mother support is not only due to economic limitations, but also because the father's mother does not have enough knowledge and understanding about the problem of disability and appropriate way of childcare orparenting for children with disabilities.Support from the environment was not good at the beginning,neighbors are still like to talk about disability, as well as his children who became peers there are still mocking.Community leaders, religious leaders, women and other figures do not care or do not bridge harmonious relationships between families of children with disabilities and their environment.
Based on the data, the researcher was developed a model that aim to increase social support family and the environment.This model is based on system theory that children individually become micro systems that are always influenced by mezzo system, that is family, groups, and also influenced by macro system, that is culture, values in society, custom, habit, social services provider and government policies.Social work sees children with disabilities can not be separated from their surroundings or situations they face in line with the concept of the individual in environment (person in environment or person in situation -PIE), (Zastrow, 2004;DuBois, 2005).
The results of the research before and after the implementation of the model indicate differences in family and environmental social support.After the implementation of the model, there is an increase in social support especially from mothers and some fathers, particularly on the aspects of instrumental support, informational support, emotional support and self-esteem support.Objective of Recommendations: to enable the community completely understand about disability issues, the rights of people with disabilities which are guaranteed by the law, the obligations of government and society in fulfilling the rights of disability so that the community of disability inclusion or an inclusive community are built.
Activities that can be done: a) Design a socialization and educational program that communicative to the community, easy to understand, not patronize but provide information.b) Establish cooperation with ministries of related institutions that intersect in disability issues, so that socialization and education is also done by the ministry or other institutions.c) Create educational materials in the form of socialization leaflets, pamphlets and banners or interesting banners.d) To socialize and educate regularly or routinely through multi media; direct media, social media, electronic, visual and print.
Data collection techniques used in-depth interviews, non-participatory and participatory observations, Focus Group Discussions and literature studies.Data validity refers to Sugiono's (2009) opinion by using techniques to test aspects: 1) Credibility, 2) Transferability, 3. Results and Discussions 3.1.Social support received by children with disabilities from the family and the children's environment before the implementation of the model Assesmenti n the first step of action research shows that social support received by children with disabilities, especially from father, mother and other family members already exists but still very minimum in all aspects.

3. 3 .
Social support received by children with disabilities from the family and the environment of the child after the implementation of the model Evaluation results from the implementation of the model indicate that there are some changes in social support from family and environment after implementationthe model.a.There is a little change at instrumental support, but there are families who have paid attention to buy toys.There are also families who have started to invite children to recreate eventhough only to the nearest place and of course, it does not require a large cost.A slight change in the instrumental support aspect is due to the limited family income.There is no job change or increasing the number of income for the whole family.Nevertheless in terms of willingness or effort has been better, that is bringing children to go play or together with children to buy toys.

Box 1 .
Condition before research Child condition: • Five children are not yet self-sufficient in the ADL • Four children are easily angry and three children are easy to cry • Four children have problems in environmental relations, two children also have relationship problems in the family and environment.Father, mother condition: • Low level of education • Informal sector jobs with low incomes • Patience with little stress • Mostly good in relationships and interactions • Patterns of parenting: caring, unconcerned and confused.Social Support: • Has been already available in allaspects but still minimum.Only done by mother or oneof the caregivers: aunt or grandmother Box 2. Condition after research Child condition: • Seven children are self-sufficient in ADL • Seven children are stable in emotion (not quickly angry and crying) • Six children good in relationship and interaction with family and the environment Father, mother condition: • Low level of education • Informal sector jobs with low wages • More patient and calm with the child • Most are excellent in relationships and interactions • Patterns of parenting are more concerned Social Support: • Mother's social support increases in all aspects, and most fathers have been involved to provide social support • The neighbors environmental show more acceptance, community leaders active to reach out the families.

Table 1 .
Education Level of Parents

Table 2 . Occupation of Parents
The results from assesment indicate that families do not know how to provide appropriate support for their disabled children.These circumstances becomes the basis implementation of the model in action research, that families need capacity building to provide support toward their child whoThe method and strategy used The method used is social work with individual (case work), social work with group (group work) and social work with the community (community development).
Objective of Recommendations: in order that the psychological problems in families with disabilities children are resolved, so that families can have a well social functioning to provide the best care and support for their disabled children.Teaching activity daily living (ADL) is easy and fun for children and families f) Increasing knowledge of father, mother about disability problem, rights and special needs of children with disability, as well as the importance of father mother support toward development of child disability.g) Helping children with disability to access education, health and playgrounds and recreation, because programs that are common in Indonesia have not been responsive to people with disabilities, including those with a child with disabilities.h) Conduct assessment of potential children with disabilities, talents and interests and assist access to the development of such potentials, talents and interests.Educational activities through social extention have been conducted at the research sites and the results are very good in terms of the neighbors' responses toward the families of disabled children.Therefore, this program is good to be continued to the public through campaign, socialization and social extention.The content of campaigns or social extention can contain the subject of information that raises public awareness.