CRPD
Rights Tracker

• A number of regulations have been issued to guarantee the health rights of persons with disabilities, including:

  • Minister of Health Regulation No. 28 of 2014 concerning Guidelines for the Implementation of the Health Insurance Program guarantees the provision of mobility aids for persons with disabilities, except wheelchairs, with a time limit on the provision of assistive devices, which is once every 5 years. In addition, this program also covers 150 types of diseases.

  • Minister of Health Regulation No. 5 of 2014 concerning Clinical Practice Guidelines for doctors in Public Service Facilities becomes a strength for the community in carrying out advocacy related to and adapted to the situation on the ground. However, for leprosy disability, health services in a number of regions are still very lacking and limited.

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• Responding to the government's report in Paragraph 151, DPOs are of the view that early intervention for children with intellectual disabilities such as down syndrome, for example, which was previously covered by BPJS (Social Security), is now no longer covered, but is returned to the parents. This is very burdensome for parents, because each examination costs around 150 – 200 thousand rupiah (about 10 USD), with a minimum of 1 examination per week). As a result, some cases of children with down syndrome experience dual disabilities (physical) due to lack of early therapy, such as being unable to walk. In a case assisted by WKCP in Boyolali, due to delayed therapy, a child with Down syndrome could not walk and eventually used a wheelchair for mobility.

• More generally, WKCP received a number of reports from parents of persons with cerebral palsy that early detection was delayed, ranging from 8 months to 1.5 years since being taken to a doctor. According to medical professionals, cerebral palsy from birth can be detected at 1-3 months of age and subsequently, the child's prognosis can be conveyed to the parents, so that parents can optimize the child's abilities that can still be developed. Of all parents who reported to WKCP, about 20 cases, none were ever informed of their child's prognosis. This information gap leads parents to seek treatments and therapies that are sometimes not appropriate for their child's condition.

• In leprosy cases, early detection is part of preventing the occurrence of grade 2 disability. The treatment guidelines issued by the Ministry of Health affirm this. Unfortunately, early detection is often not carried out, especially in areas far from health service centers. One case occurred in East Nusa Tenggara (NTT), a person with leprosy, Roswita Tabu, received treatment since September 2019. However, because there was no regular development observation carried out by officers who were on long-term leave, Roswita experienced a leprosy reaction and subsequently passed away on December 16, 2019.

• Responding to Paragraphs 154-157 of the Government's Report, DPOs are of the view that reproductive health is not seriously provided to persons with intellectual disabilities, hearing disabilities, and other disabilities vulnerable to sexual violence or exploitation. In SLBs, no one provides them with understanding of reproductive health. The situation of women with disabilities, separately conveyed by other DPOs networks (HWDI), shows the low level of reproductive education for persons with disabilities.

• Regarding Paragraph 155 of the Government's Report on assistive devices, government policy is not very clear, as there is still an assumption among the government that disability refers only to those with physical barriers, not yet accommodating the needs for assistive devices for various disabilities. Currently, the central government includes the Special Allocation Fund (DAK) in the National Mid-Term Development Plan (RPJMN) for assistive devices in every district/city, but oversight of the implementation of this DAK has not been established and local government guidelines and referrals are also not clear, which then causes this aid to be not on target or merely charitable in nature.

• Leprosy. The prevalence of leprosy in Indonesia increased between 1954 and 1974. In 1954 there were 22,000 people with leprosy out of 79,025,881 Indonesian residents. About 12% (3,095 sufferers) were in Sulawesi out of a total population of 5,930,251 people. Twenty years later, in 1974, the number reached 93,395 people out of an Indonesian population of 129,083,000 people (Dali Amiruddin, in Leprosy: A clinical approach, Hasanuddin University, April 2001). After the Multi-Drug Therapy (MDT) treatment method was introduced in 1982, the number of sufferers decreased to 60,000 in 1990 and has continued to decline until now.

• However, the problem is that these drugs (MDT) are slow to be obtained or received by people with leprosy due to long bureaucracy. Meanwhile, the Central Government handed over this matter to local governments as a result of decentralization, and the center does not yet have an effective supervision scheme to ensure the drugs are accessible. This occurs in the Jabodetabek, Jambi, and East Java areas, not to mention remote areas.

• Stigma against leprosy severely marginalizes both people with leprosy and those who have recovered (now also called OYPMK or People Who Have Experienced Leprosy) but are left with residual impairments. The sufferers experience stigmatizing treatment, which includes labeling people with leprosy, stereotypical speech—a cursed, damned disease, segregation (living in leprosy villages), and discrimination in all sectors of life—ranging from their own homes where some are expelled by family and villagers to neglect in other public spaces.

• Even certain beliefs in religious teachings with a Leprophobia nuance reinforce the stigma of leprosy sufferers. One of the widely quoted hadiths in discussions about leprosy is the Hadith narrated by Bukhari “Avoid the person afflicted with judzam (leprosy), just as you run from a wild lion”. Whether this Hadith is dhoif (weak) or shahih (authentic), I leave to the experts.

• The creation of the Jongaya Leprosy Village in South Sulawesi is an act of government attention and fulfillment of rights for OYPMK. However, the concept of a leprosy village is an exclusive process for OYPMK which ultimately perpetuates stigma and ongoing leprosy discrimination.

Habilitation and Rehabilitation

• The Indonesian Government is currently preparing the Government Regulation Draft (RPP) on Habilitation and Rehabilitation as mandated by Law 8/2016. Ideally, this PP should have been issued 2 years after the Law was enacted. The drafting has involved DPOs, but the Government still maintains several rehabilitation principles from the previous PP which referred to Law No. 4 of 1997, such as the operation of institutions still using a medical approach.

• A misconception about habilitation and rehabilitation is also visible in Government Regulation No. 52 of 2019 concerning the Implementation of Social Welfare for Social Beneficiaries. Although this PP affirms the prevention and handling of risks from social shocks and vulnerability, there is no article regulating habilitation. Article 4 affirms that the PP only covers: rehabilitation, social security, social empowerment, social protection. Regarding the approach, rehabilitation for mental disabilities mentioned in this PP is through spiritual, moral, and religious mental guidance.

• In the implementation of habilitation and rehabilitation, the State has not guaranteed the availability of reasonable accommodation for persons with disabilities to achieve independence and equal rights. For example, the provision of wheelchair aids by all health service units uses only one standard, which is the adult medical standard, which actually fosters dependence on companions and results in children with disabilities experiencing psychological impacts, because they cannot use the wheelchair independently.

• Disabilities have not made habilitation and rehabilitation programs multi-sectoral and they are still charity based, with weak supervision. Persons with disabilities who have multiple needs/costs of living compared to the general population are actually many who do not receive social protection programs, and become objects of rehabilitation.

• Regarding Paragraph 149 of the Government's Report, the current condition is that the government only refers to rehabilitation and forgets habilitation. This then causes delayed intervention given to children and ultimately leads to dual disabilities.

• Community-Based Rehabilitation (RBM) that exists is still largely carried out by non-disabled people and does not significantly involve persons with disabilities in its implementation. RBM is a Government program to strengthen CSR for the fulfillment of assistive devices. Ideally, RBM should be formed by the community (persons with disabilities) and used for the benefit of persons with disabilities. However, in practice, the Government forms the RBM. The RBM team formed has not been equipped with knowledge and understanding of the Community-Based Rehabilitation Strategy, which actually results in many persons with disabilities being excluded from development programs.

• The existence of social rehabilitation centers still requires supervision, because some of these Centers actually become places for chaining/shackling, neglect, and other human rights violations.

• The Mobile Social Service Unit (UPSK) Program has been implemented by the Government, although still with a medical approach. The habilitation and rehabilitation approach needs to be enhanced in this policy by increasing understanding and skills for parents of persons with disabilities, with the involvement of persons with disabilities in planning, implementation, monitoring, and evaluation.