Sep 21, 2017 Last Updated 1:04 PM, Sep 13, 2017

Falling through the cracks

Published: Feb 13, 2017

Sandeep Nanwani and Clara Siagian

Millions of Indonesians are unable to access the new Jaminan Kesehatan Nasional (National Health Insurance) or JKN simply because they are unable to register. By relying on the inflexible civil registration system that requires citizens to register through their family, the JKN often fails to cover those who need it the most, solely as a result of poor administration. 

Particular communities are affected more by this exclusion and the resulting lack of access to care. This was the case for Noni, an HIV-positive waria (commonly but inadequately translated as ‘transgender person’), who overcame enormous struggles to migrate from Kalimantan to Bali and pursue a career as a hairdresser. But because she lacked the means to receive and be retained in HIV care in Bali, she developed an easily preventable opportunistic infection. The system failed her not because HIV care wasn’t available in Bali, but because she was not formally registered.

Sandeep, one of the authors, first saw Noni when she was completely unconscious. She had been rushed to the emergency room of a major Yogyakarta hospital in late July 2015. Her courageous waria friends had brought her all the way from Bali to Yogyakarta to obtain the care she desperately needed. Knowing that Noni didn’t have an identification card or insurance, an NGO provided her with an identification card. She was then admitted to the hospital and diagnosed with an AIDS-associated brain infection. Three days later, Noni died.

Noni was not alone in her struggle. Anom, a young HIV-positive teen, struggles to make ends meet through different jobs on the streets. He was left to survive on his own at 14, when both his parents died of AIDS. Being in and out of therapy due to a life constantly on the move, Anom developed several complications.

Having no other option, he was hospitalised to treat his life-threatening complications and subsequently discharged to a government-affiliated panti (temporary shelter). After a few weeks, Anom ran away due to violence and lack of freedom at the panti. At the time of writing, Anom’s whereabouts is unknown and it is unlikely that he is receiving HIV care.

Access for all

In 2014, Indonesia launched an ambitious plan to cover all of its 255 million citizens under the JKN, one of the biggest single payer universal health initiatives in the world. Covering a wide range of services from basic prenatal care to more sophisticated services such as surgery and cancer therapy, the JKN is a laudable attempt by Indonesia to fulfil its citizens’ right to health care. However, only around 168 million Indonesians are currently registered under the JKN, of whom roughly 92 million have their premiums paid for out of the national budget.

The JKN should be available to every Indonesian citizen. Why then, we ask, are people like Noni and Anom, who need care the most, unable to access it? We examined the practical administration of the JKN and identified a number of shortcomings, which, despite the best efforts of healthcare professionals and bureaucrats, make it difficult for many Indonesians to gain access.

Firstly, to be registered in the JKN, individuals need to have a NIK (Population Identity Number). The NIK system was introduced in 2010 as part of civil registration reforms. The introduction of NIK is a positive step as it attempts to streamline social protection within the civil registration database. However, according to the Ministry of Home Affairs, 22 million Indonesians do not yet have a NIK.

Getting a NIK is in itself a laborious and difficult task for many Indonesians. For people like Noni it is nearly impossible. A NIK can only be obtained through civil registration – either through birth registration or by being included on an official Family Card that lists a permanent physical address. This is a requirement that many waria, vagrants, and street children cannot meet because they have been estranged from their families.

No family, no registration

This family-based system traces its roots back to the very birth of the nation, when familial authority was co-opted as nationalism in the revolution against colonialists. The newly independent nation was founded on the premise that it was made of families. The relationship between national identity and kinship was further enforced under the autocratic New Order government led by President Suharto. During this period, there was an intense reshaping of Indonesian society, advancing the nuclear family with defined gender roles. The Family Card was introduced as the foundation for civil registration in this period with the oldest male being listed as head of household. Those who did not fit into this state constructed family, often called ‘wild citizens’, were forcibly put in institutions for rehabilitation. The JKN and the civil registration system are based on a structure inherited from this system.

For those like Noni and Anom, who no longer have any connection to their families, the only way to be registered in the system is to be institutionalized in a panti, where they would be added to the panti’s official Family Card. This practice is a common way of trying to support individuals who do not have a connection with their biological family. However, as demonstrated in numerous studies and seen in Anom’s case, panti are often poorly managed and have high turnover rates. 

Even some families that are still together face difficulty obtaining a Family Card because of the requirement for a physical address and written validation of it from local leaders or village chiefs. This is a requirement that homeless families and families living in informal urban settlements cannot meet. This leaves many in these communities effectively excluded from the universal health coverage they are entitled to.

Faced with this challenge, a few local governments maintain a contingency budget to finance and care for those without a NIK who suffer from catastrophic illnesses. Yogyakarta stands out for its local health coverage for marginalised and vulnerable communities, which owes much to the relentless activism of the waria community there and a relatively supportive local government. All waria and other vulnerable people in Yogyakarta that fit into one of 26 categories of ‘social welfare problems’ are covered by a health payment scheme called Jaminan Kesehatan Sosial (Social Health Coverage) or Jamkesos.

However, regionally administered health coverage schemes, like Jamkesos, remain inadequate. First, these schemes require individuals to be registered with a state-approved NGO and thus potentially exclude people who have migrated, such as Noni. For vagrants and homeless people, who do not have strong community networks or links to NGOs, the only way to access these schemes is by being in a panti. Second, with the recent local vagrancy laws and raids on sex workers which forcibly move people from the street and a panti, these populations are becoming even more marginalised from public space. They are thus pushed further away from care because approaching public services might impose certain risks.

Unidentified and unsupported

Noni and Anom are two Indonesians who in principle have a right to access healthcare, but were unable to access the JKN when they needed it most. The experience of Noni and Anom – along with the 22 million other Indonesians with no NIK – is evidence of an administrative and structural exclusion that goes against the principle of universal coverage. 

If we believe that every Indonesian has a right to dignified care, we must challenge the ideologies underpinning citizenship in Indonesia. To achieve its goal of providing truly universal and inclusive health coverage, the JKN must be adjusted to accommodate the diversity of individual and familial arrangements that exist in practice.

Names in this article have been changed.

Sandeep Nanwani (sandeep_nanwani@hms.harvard.edu) is a candidate in the Master of Medical Sciences in Global Health Delivery program at Harvard Medical School. After graduating with an MD, he has worked to provide care for street-based and marginalised populations in Yogyakarta.

Clara Siagian (clarasiagian@puskapa.org) is the technical lead and a researcher with the Center for Child Protection, Universitas Indonesia. She holds a master’s degree in Public Policy from the Australian National University.

 

Related articles from the archive

Jul 27, 2007  Free clinic for street children by Wied Trisnadi and Paramitha Hapsari
Street children learn to value their health in Yogyakarta

Jul 30, 2007  AIDS education by Sharyn Graham
The government works with waria in South Sulawesi

 

Inside Indonesia 127: Jan-Mar 2017

Comments  

#2 +4 Ari 2017-02-17 11:47
Thanks for bringing to light the stories of Noni, Anom and those people like them. It shows why we need systemic policies, rather than ad hoc aid, to improve the lot of vulnerable people.
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#1 +4 sharyn davies 2017-02-15 21:29
Great article!
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