Contested Concepts of Health Policies for the Disableds in Yogyakarta

Slamet Thohari

Nearly all disabled people in Yogyakarta have insufficient monetary income and live below the poverty line. Due to the comparatively low levels of education that they receive, many are unemployed and dependent on their parents and families for support. This condition is disastrous when such disabled people become ill or suffer an accident. Meanwhile, middle class and wealthy families normally can afford to purchase accident and health insurance for their children.

Many important things necessary for the health of those with disabilities are not recognized in related health policies. In addition, special needs such as assistive devices like corsets and hearing aids, high doses of vitamin A, and therapy for paraplegia or cerebral palsy are not listed at all in the government’s health security scheme (Andriani and Zakiyah, 2007). Moreover, health facilities and services provided by the government are unreliable when it comes to recognizing disabled people’s needs. Access infrastructure such as ramps, braille signs for the blind, and other essentials for accessibility are unavailable, particularly in rural areas. Many public health facilities, such as Pusat Kesehatan Masyarakat (Center for People’s Health) or Puskesmas and other health services centre also lack proper accessibility for people with disabilities. This is largely due to the fact that the government has not yet issued any comprehensive regulations that would set a legal foundation for accessibility in health services.

National and local health services financing schemes thus fail to reach the disabled, even in basic regulations, and the disabled are a most vulnerable population since they are largely poor. Although there is a national regulation on protecting people with disabilities, including the provision of health services and access, it has not yet been adopted in local areas, where there is a lack of specific rules regulating health access for people with disabilities.

There are two primary governmental systems for financing health security. One type of health security is known as the Askeskin (Asuransi Kesehatan Masyarakat Miskin, or Health Insurance for the Poor) program. In 2008, this program was changed into the Jamkesmas (Jaminan Kesehatan Masyarakat, or Public Health Security) program, which is managed by the Central Government via the Ministry of Health, in cooperation with PT Askes, a health insurance company belonging to the goverment. The second type of system is handled directly by the regional government and is known as the Askesda (Asuransi Kesehatan Daerah, or Regional Health Insurance) system, but in Yogyakarta this system is called the Jamkessos (Jaminan Kesehatan Sosial or Social Health Security) system.

However there are problems regarding to these health policies. At the national level, the Askeskin program often did not provide services that reached its target group, due to high levels of corruption and a culture of collusion, whereby most of its funds went to benefit those who are categorized as middle class rather than the poor. This was the case because many people in positions of responsibility in this system took benefits for their own sake. Moreover, the quota system implemented at the provincial level for the Rukun Tetangga (Basic Unified Administration) or RT does not clarify who in society should be classified as “poor,” and more precisely it does not specify the disabled. Compounding on this, many health facilities such as hospitals, particularly private hospitals, are reluctant to accept patients on the government health insurance program, since reimbursements from the government insurer have a terrible reputation of delay and bureaucratic red tape. Due to the complexity of reimbursement procedures and the problematic way in which data processing is conducted, a large number of the disabled can not access the Askeskin program (Andriani, and Zakiyah, 2007: 30)

Similar to what happens at the national level, the local Jamkesmas program also does not recognize people with disabilities as a group of stakeholders, mentioning only that health security aims to serve poor people, without mentioning people with disabilities as part of that group. In fact, some people with disabilities are economically not very poor. However, if they fall ill, they can easily slide into poverty due to the overwhelming cost of health care. In addition, it is likely that people with disabilities will have their own specialized health care assistance, when basic health care is what is actually needed.

Clearly, people with disabilities do not enjoy equal access to the health care system, nor to health insurance programs, and they have not benefited from equal protection of the law in this regard. The health care needs of persons with disabilities are not covered in government subsidized health insurance programs, thus leading to exclusion on the basis of disability. Where health services are available to the general population, they are typically inaccessible to persons with disabilities due to physical barriers and communication barriers.

The health conditions of people with disability is reported in a survey done by the UCP Indonesia and Ford Foundation (2010), showing that 47.8% of people with disabilities in Kulon Progo live with no access to health care. In Gunung Kidul, 52.8% such people lack such access, and in Bantul, fully 78% of people with disabilities have no access. Likewise, in Sleman, 72.2% people with disabilities lack access to health care. Yogyakarta is quite better thna Gunung Kidul and Sleman in this regard, as a slight majority (52%) of people with disabilities have such access.

Clearly, the condition of health care for people with disabilities in Yogyakarta does not yes fulfill the ideals of the CRPD (Convention of Rights of People with Disabilities). At both the national and the regional level, health security policies should elevate people with disabilities to the same position as normal people. Currently, they are still a subordinated group in the terms of their rights of access to health.

Due to this situation, several NGOs involved in the disability movement have advocated and struggled for equal rights for people with disabilities in health issues. SAPDA (the Centre for the Advocacy of Women, Difable [Persons with Different Abilities] and Children) is an NGO that is very keen on health-related advocacy for the disabled. It was established in 2005 with a vision to realize inclusiveness in all aspects of social life to ensure protection of the basic rights of women, the “difable,” and children in education, health and employment on the basis of equal human rights.

According to SAPDA, and echoing the general opinions of NGOs concerned with disability in Yogyakarta, people with “disabilities” should instead be described as having “different abilities” or difabel. Due to discrimination against this group, they are marginalized within society, and they are only disabled to the extent that oppression exists within society. One such source of discrimination is in health care policies which, SAPDA argues, are based on the government’s assumption that the disabled are “abnormal” people, implying that health services for people with disabilities should be under the management of DinSos. As such, health care policies barely recognize people with disabilities (Andriani and Zakiyah, 2007).

SAPDA has engaged in a variety of initiatives to advocate for equal rights to health care for people with disabilities. For example, they have organized people with disabilities in Yogyakarta to educate them about their rights. Two significant of organization of people with disabilities that established through such programs are Paguyuban Penyandang Cacat Sleman (Association of Persons with Disabilities in Sleman, or PPCS) and Persatuan Penyandang Cacat Kulonprogo (Union of Persons with Disabilities in Kulonprogo, or PPCKP). SAPDA has also organized people with disabilities in Bantul, including in Bambang Lipuro, Jetis, and many other villages affected by the 2006 earthquake that hit Yogyakarta and Sleman. These organizations aim to unite people with disabilities in one voice to struggle for their right to equal access for health care.

In addition, SAPDA has given workshops to build the capacities of the disabled in general. The first of these workshops focused on enhancing technical capacity, addressing the capacity of the disabled to be self-reliant. The second focused on strategic capacities, namely the enhancement of their capacity to undertake in advocacy at the local and national levels for the fulfilment of their fundamental rights.

In these capacity building programs, advocating for the fulfilment of fundamental rights, SAPDA collaborated with IDEA in organizing budget training activities in Klaten, Sleman and Yogyakarta City at the end of 2005. Upon the completion of this budget training, SAPDA and the communities/organizations of the disabled at the municipal and city levels moved forward in advocacy for fulfilment of the rights of the disabled in health care and budget allocation for the disabled in Yogyakarta’s annual provincial and municipal budgets.

Much of the process of organizing and building the capacities of the disabled were supported by “local wisdom” as collective social capital. An example of this is the traditional position of the disabled in society, particularly in rural areas, where it is still common to believe in the traditional Javanese cosmology that positions people with disability as extraordinary and powerful people in society.

Various programs aiming to elevate people with disabilities from subordination within modern society receive the support of such communities, because they recognize that the disabled should not be isolated and neglected when it comes to health issues. Moreover, Javanese cosmology and beliefs lead them to view disabled people as privileged in a certain way. Health in general is a big issue within Javanese culture, and a common greeting would be piye kabare, sehat? (“How are you, are you healthy?”). Being healthy is an important measure of happiness of for Javanese people. The health of the disabled is even more important in traditional Javanese culture, as people with disabilities standing at a privilege position in Javanese cosmology. Thus, one of the major reasons for success in these capacity building projects is the leverage of existing social capital in traditional Javanese society.

A second strategy applied by SAPDA is to develop advocacy networks, to ensure availability of resources in lobbying government officials responsible for handling health security and convince them that health care for the disabled should be a specific topic of policy. Such lobbying targeted Bapeljamkesos, the agency in charge of implementing health care across the province of Yogyakarta. In this case, SAPDA also advocated for special provisions for the disabled in hospital and other public health facilities, including the provision of special access for the disabled.
SAPDA has also worked to build awareness among people with disabilities who work in the government, as well as those who are disabled and live at home with families rather than staying at special dorms or private religious institutions. In doing so, they inform others of the needs of the disabled in terms of health care and government programs. This campaign was supported by many institutions, as well as NGOs concerned with disability, and organisations of disabled people in Yogyakarta. SAPDA sent recommendation latters, based on original research, to government officials and stakeholders concerning the ideal type of policy that should be done on health care for the disabled (Andriani, 2008).

Regardless of the difficulties and the long struggle for equal health care rights of people with disabilities, SAPDA met with a great deal of success in its programs, including rallying 1,573 disabled people in efforts to secure explicit health security allocations from the Yogyakarta provincial government. After this lobbying, the health care budget for disabled people was increased, and other things. In this case, the SAPDA succeeded in advocating for the provincial budget to be more sensitive to the disabled and to protect the basic rights of the disabled as written in the Convention of Rights of People with Disabilities.

The case of SAPDA leads us to conclude that the government perceives the disabled as an “abnormal group,” which is subordinated under other people. This concept, an ongoing problem, is contested by the competing view that is raised by SAPDA and other NGOs to conceptualize disability as a social construction. Indeed, SAPDA is rather avant-garde in Yogyakarta in arguing that nobody should be referred to as “disabled,” since everybody has different abilities, and that people with disabilities have the same rights to health care, just like other citizens.

The conflict between these two views is a case in which there are conflicting habitus groups, namely, one for people within goverment and another for people within the social movement. People within the government, based on their background, environment, and social networks, have their own habitus that guides their concept of disability. On the other hand, people in SAPDA, as described above, have their own connections with people in other NGOs. Their background and networks confirm their perception that the disabled are entitled to equal rights with other people. Disability is thus contested in its meaning, and consequently policy on health care for people with disabilities is a field where differing habitus contest to define it.

As described above, health policy in Yogyakarta could incorporate Javanese concepts and culture more by engaging the local wisdom of Javanese people, namely, that health is a measurement for the human condition, supporting the position on health advocacy taken by SAPDA and other NGOs. In fact, Javanese perceptions stand in opposition with government policies, as the habitus of Javanese people is strongly congruent with the concepts of NGO activists who wish to change government policies. In sum, the Javanese concept of disability together with the social model of disability conflict with the medical model adopted by the gov

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