Voices: Luthfi Azizatunnisa’

Luthfi Azizatunnisa’ is a PhD student at ICED, LSHTM

What is your current role working on disability and health?

Currently, I am a PhD student. Back home, I am a teacher and researcher at the Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Indonesia and I am part of the Center for Tropical Medicine at the same university. As a researcher, my role is to generate evidence on disability and access to health care. As a lecturer, I teach epidemiology and health promotion, and raise awareness about disability among my students, future health professionals. When I graduate, I dream of developing a course on disability and health. In addition, I hope that in the future, I can integrate a disability-inclusive approach to infectious diseases or other fields of research and intervention. I believe that every health intervention should consider people with disabilities.

In your opinion/experience, what are some of the main barriers for people with disabilities in accessing health? 

I am a person with physical disability (a wheelchair user). Most of the barriers I experience are related to physical and financial accessibility. I have often found inaccessible health facilities with inappropriate ramps (too steep, without handrail, and slippery floor), toilets (too narrow, without handrail or red cord), medical equipment (non-adjustable beds), and reception tables (too high), especially at the primary care level. For example, I recently needed dental care, but my primary care clinic had no lift to access the dental service room, located on the second floor of the building. The health manager did not expect that a wheelchair user could need dental care services like any other person. Another physical barrier is the inaccessibility of public transportation. Therefore, I often have to allocate more resources to transport, such as taxis, to reach the health centre.

In terms of financial barriers, the coverage of assistive devices is very limited. A good, fitted wheelchair is expensive and unaffordable and is not covered by our national health insurance. The same applies to other assistive devices. An OPD in Indonesia compared the average salary of people with disabilities, the price of different assistive devices, and the national health insurance coverage. They found that there is a huge gap between what people with disabilities can afford and the level of national health insurance coverage. This means that most assistive devices are unaffordable for people with disabilities in Indonesia.

“Often, health workers believe that the health needs of people with disabilities are always related to their disability and that they are not capable of making decisions.”

Furthermore, stigma is a huge barrier to accessing healthcare. Often, health workers believe that the health needs of people with disabilities are always related to their disability and that they are not capable of making decisions. A sad but true reality that is still present in the community. Negative attitudes of family members also hinder people with disabilities from seeking healthcare, as family members feel ashamed of their disability or do not prioritise their health care needs.

What should your Minister of Health know about these barriers? What should they do to address this issue?

There have been many reports and evaluations on the health needs of people with disabilities and the barriers to accessing healthcare. The Ministry of Health has also developed a roadmap for inclusive healthcare. The governance and policy for an inclusive health system already exists, but its implementation needs to be monitored, evaluated, and strengthened. The policy needs to be translated and operationalized so that it is technically adopted at the grassroot level, for example through training of health professionals, technical guidance, or a budget allocation policy.

“The governance and policy for an inclusive health system already exists [in Indonesia], but its implementation needs to be monitored, evaluated, and strengthened.”

If you could change one thing about health care for people with disabilities, what would it be?

If given the authority, I would establish a policy of accreditation of health facilities, which should have staff trained in disability-inclusive health care and accessible health facilities (both physical infrastructure and information). In this case, I believe a top-down approach will be powerful in making these changes. With this policy, the demand for health worker training will increase and hopefully medical schools will also adapt their curricula.

What are you hopeful about disability inclusion in health going forward?

I hope that healthcare workers will be trained in disability-inclusive healthcare, and that this subject will be included in the curricula of medical, public health, nursing and other health schools. Furthermore, I expect that health facilities will be accessible, that health services will be affordable, and that health insurance will cover assistive devices. Although it is difficult to change the transport system, I hope that health services will be able to reach people with disabilities or provide them with closer care by strengthening Posyandu (health posts) and Puskesmas Pembantu (satellite primary health centres) in the villages. As a good practice example in Malang, East Java, a Posyandu has been designated for people with disabilities, where their health is regularly monitored and their health problems are treated.

What has COVID-19 shown and/or changed for disability inclusion in health?

In Indonesia, people with disabilities were one of the priority populations to receive COVID-19 vaccination through a massive campaign, which was endorsed by several ministries, presidential staff, and sub-national authorities. It also generated tremendous support from the private sector. The district health office, public and private hospitals, universities, private companies, OPDs, and many volunteers were involved in the implementation. OPDs were involved in the planning phase and in mobilising people with disabilities. The service provision arranged was very accessible, including an accessible health venue and transportation. One of the largest online taxi companies provided pick-up services. Volunteers were ready at every corner to help people with disabilities and sign language interpreters were available. After this valuable experience, hopefully by now, health authorities and health workers have improved their knowledge and awareness of how to provide inclusive health services.