CRPD
Rights Tracker

Law No. 17 of 2023 concerning Health, Articles 6 to 16, concerning the responsibilities of the central government and local governments.

Articles 22 - 29 concerning health implementation efforts.

Article 53 concerning the health of persons with disabilities

The Law mandates the compulsory budget expenditure, which was previously 5% of the State Budget (APBN) and 10% of the Regional Budget (APBD) excluding salaries, based on performance, is abolished. The programs focus on preventive and health promotion, including central and regional infrastructure; focusing on heart and diabetes.

For persons with disabilities with rare or chronic diseases; rare diseases are generally chronic, long-lasting, classified as severe, and progressive, they are neglected.

Regarding rare diseases, the government does not carry out promotion and campaigns, this is done independently by DPOs (Disabled Persons' Organizations).

For treatment and care, BPJS does cover it but only some; jaw correction or heart correction is gradual, not all of it is covered by BPJS, including essential health aids for Rare diseases, such as breathing apparatus.

After 1 or 2 months, hospitals start recommending patients for home care, even though patients with disabilities do not have adequate equipment at home, do not have the skills, do not have the ability; everything has to be managed independently. When there is external assistance, these tools also cannot be operated with the electrical capacity owned by the patient.

In the health sector, the following cases still occur:

• Related to medicines

  "for health problems, if the medicine claimed by BPJS is not suitable for the child, but if they want the usual medicine, they have to pay the general price.

  
  

  "expensive medicines such as muscle relaxants which cost IDR 10,000 per pill. While it can be taken three times a day"

  
  

• Related to the availability of services and knowledge of medical personnel

  "Ma'am, I'm just sharing, if it's a report there might be a specific format, right. Karin was born in South Sumatra, precisely in Muara Enim regency, previously Karin was asked by the pediatric specialist to have an MRI when Karin was not yet a year old, I forgot the exact age. Karin has a history of prematurity because of premature rupture of membranes for 2x24 hours (at that time it was weekend the doctor waited until Monday for a c-section, the reason was to maintain the baby in the womb as long as possible for lung maturation, even though when consulting in Jogja, 2x24 hours rupture worsened the baby's brain condition) at 32 weeks, low birth weight 1.7 kg. Then when I took Karin to Palembang General Hospital for MRI, the pediatric neuro doctor said the cause was clearly prematurity and then only gave diazepam for spasticity and suggested only physiotherapy. Finally, I brought Karin back home to Jogja, and in Jogja, there were many examinations, eye test, ear test, MRI, EEG, TORC, it seems the regions are still very un-supportive for cerebral palsy cases Ma'am. After birth Karin immediately went into NICU for 1.5 months. I'm quite disappointed with the pediatric neuro doctor in Palembang. Karin is one of the lucky ones to be able to go to Jogja, maybe in South Sumatra there are still many cerebral palsy children who are less fortunate to receive proper health services Ma'am. and minimal information about handling and assistance for cerebral palsy families"

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• Related to health assistive devices PEG (Percutaneous Endoscopic Gastrostomy) and NGT:

  "The first PEG placement, that was Hans' fortune. So the pediatric surgeon kindly submitted it to the Hospital, and it turned out the Hospital was willing to cover it. This PEG needs to be replaced periodically every 4-6 months. The neurologist himself admitted that if abroad, it is common for CP children to use PEG, but in Indonesia they are not yet brave enough to suggest it to parents because the tool is expensive and is not covered by BPJS. But for the installation, BPJS is willing to cover it. Yesterday 40 days of hospitalization, Alhamdulillah we didn't spend a single penny. Even baclofen, if still inpatient, can still be covered by BPJS. Once discharged for outpatient care, then all the expensive medicines are not covered. For the next time, we have received news that the PEG device must be self-funded. The installation procedure can be covered. I also want to share some things that are not covered by BPJS: 1. NGT tube. 2. NGT placement if it comes off at any time, even when first installed. 3. At Faskes 1 (First Level Health Facility) installation can be free, but the personnel cannot install it (this is funny actually, right). 4. PEG is not covered*)*. 5. Let alone the care accessories (Like hipafix, NaCl, etc). 6. Medicines that are not covered: baclofen, nebu medicine, fleet enema. This Baclofen is only available as a patent drug, the generic one from the government itself is not available. And the price is IDR 9.8 thousand per pill, even at Kimia Farma, which is a State-Owned Enterprise, the price can reach IDR 11 thousand (this is also beyond reason, a government-owned body but the prices of medicines and medical devices always exceed the Highest Retail Price (HET), and are always higher than other pharmacies. Unfortunately, the medicines that are always difficult to get are only available at KF)"

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• Therapy that is not suitable for need

  A simple example: the rehab doctor suggests daily therapy to catch up on delays, but BPJS only allows twice a week, this ultimately can hinder progress. What might be curable in a short time, but because the program is not maximal, it takes longer, or even does not cure. That is like a waste of time and cost.