|HIV, AIDS and Advocacy|
Bulletin of Medicus Mundi Switzerland No. 125, September 2012
Citizen Voice and Action – An approach to Social Accountability
Citizen Voice and Action is an approach that aims to increase dialogue between ordinary citizens and organizations that provide services to the public. It also aims to improve accountability from the administrative and political sections of government at local and national in order to improve the delivery of public services.
By Aashish Masih *
Citizen Voice and Action (CVA) aims to empower communities to influence the quality, efficiency and accountability of public services. Educated, empowered and mobilized citizens are encouraged to assess the performance of public services with the standards of service that government has committed. Citizens together with those providing services (service providers), government and local partners identify action to take to improve public services.
This approach is based on the view that individual and “community” are citizens of the country. Each citizen has the right to communicate with, and have a relationship with, their government. Active citizenship and engagement with government, helps governments to work effectively and to provide quality services.
How HIV-positive activists are transforming public services in India
For Suman, a young resident of a poor neighborhood in northern Delhi, it is not HIV that killed her husband Rajinder. No, it was a state bureaucracy that was unable to quickly and effectively provide him with the health services to which he was entitled. (Story compiled by Jeff Hall – CVA Global Coordinator World Vision International 2011)
Suman is one of approximately 2.2 million Indians living with HIV/AIDS. Now she is working with her fellow other AIDS activists to ensure that others do not suffer the fate of her husband. Together, they are using World Vision’s “Citizen Voice and Action” approach to improve the health services that keep them alive. At a meeting of activists in northern Delhi, Suman sits at a small table and tells her story. In the year 2000, she and her husband Rajinder were diagnosed with HIV. With two children depending on them, Suman and Rajinder were devastated. But they began to take every measure possible to extend their lives, and signed up for a government programme that provided Anti-Retroviral treatments (“ART”). ARTs can greatly extend the life of those living with HIV and AIDS.
But then Rajinder had an allergic reaction to the treatment. His skin broke out in a horrible rash and he was forced to discontinue the treatment. The doctors were able to cure the rash. But in the absence of ARTs, the HIV in his body became much more lethal. Rajinder’s doctor recommended him for “2nd-line” ARTs. These drugs are much stronger and are reserved for those with worsening cases of AIDS. Rajinder immediately applied to receive the drugs to which he was entitled under Indian law. But because of government bureaucracy, the 2nd line ART drugs were not available to him for another 6 months.
By that time he was dead…“I’m sure he would have survived if he would have had the medicine sooner,” says Suman. She breaks into tears. The others comfort her.
It is in this context of systemic failure that World Vision’s “Citizen Voice and Action” approach works. Citizen Voice and Action is a community-led advocacy approach that empowers citizens to hold their governments accountable and improve the services on which they depend. Using the Citizen Voice and Action tools, communities learn about local law and the services to which they are entitled. Next, together with government, they visit clinics, schools, and other government facilities to compare these commitments with reality. Finally, working collaboratively with government, communities create an action plan to improve services. Since 2005, World Vision has equipped hundreds of communities around the world with the Citizen Voice and Action approach.
In 2010, Suman and other HIV-positive activists in northern Delhi participated in a Citizen Voice and Action training. By leveraging India’s “Right to Information” law, they extensively researched the precise nature of the services to which they were entitled. When they measured those entitlements against reality, they found gaping holes. Working with the Delhi State AIDS Control Society (or “DSACS”, the government agency responsible for combating HIV and AIDS) the activists created an action plan. DSACS acted quickly on their behalf.
As a result of the Citizen Voice and Action exercise, the community of HIV positive people in northern Delhi has seen improvements in the services on which their lives depend. For example, after the exercise, clinics were equipped with scales so that they could monitor the critical weight changes in HIV patients.
Some ART centers also greatly improved their measures to protect the confidentiality of patients. Prior to the exercise , doctors and nurses would counsel HIV+ individuals behind a thin curtain. But after the Citizen Voice and Action exercise, consultations were moved to private rooms.
Likewise, Suman and her fellow activists were able to lower the costs of treatment. Prior to the exercise, Suman and others were forced to purchase their own test tubes for the frequent blood work that they must acquire. But Indian law guarantees that test tubes will be provided by the clinics. After raising their voices, clinics began to provide these essential materials.
Ultimately, of course, it is the activists’ children who benefit from better health services. After Rajinder’s death, Suman was left to care for their 13 year old son named Shushil and an 8 year old daughter named Bhumika. Shushil escaped infection, but little Bhumika has tested positive for HIV. Every day, Bhumika takes her ART pills, once with her morning tea, and once at night before going to bed. Bhumika knows the schedule very well and reminds her mother if she forgets. Suman refers to the pills as “HIV” medicine. But Bhumika, not able to say “HIV” calls them her “A Chai” medicine. “Chai”, in Hindi, means “tea”. When asked how her work will help her Bhumika, Suman says “the improved services at the ART clinics will mean a lot to her.” But to Suman, it is just important that Bhumika benefit from an atmosphere free from stigma and discrimination. The group’s Citizen Voice and Action work has also helped to create this atmosphere.
Fighting stigma and discrimination has not been easy. Deepak, a member of the activist group, says “prior to the exercise, doctors and nurses treated us differently. They charged us more, provided us with poorer service, and treated us extremely rudely.” Kumar, another activist, concurs. “When we used to fill out forms, they used to have a separate pen that was only for HIV positive patients. I wanted to tell these people, ‘I am a human being, just like you.’” Bhumika felt this discrimination firsthand. Once, before the Citizen Voice and Action exercise, Suman took Bhumika to be treated for a horrible case of diarrhea. When the attending nurse realized that Bhumika was HIV+, her attitude changed and she became very unpleasant. Unlike other patients who were given beds, Bhumika was sent by the nurse to sleep on the concrete floor in a corner with only a sheet.
But now, following the Citizen Voice and Action exercise, the activists say that clinic staff have changed their attitudes. DSACS has educated clinic staff about the nature of HIV, raised awareness to counter the stigmatizing myths that surround HIV, and has given orders to clinics to change some of the most egregious procedures. Now, having changed some of the conditions at the clinics, Suman and her friends have set their sights higher. Working in coalition with other activist groups across India, they are fighting for quicker, easier access to 2nd-line ARTs – the same drugs that could have saved Suman’s husband Rajinder. .. But Suman does not dwell on what could have been – her sights are set on what can be. And she is passing along her passion for justice. She says Bhumika will make a good doctor and an activist. “Bhumika knows that her father died because he couldn’t take his medicine. That makes her passionate about good health. And I’m teaching her about our work [through Citizen Voice and Action]. If all our rights are not fulfilled, I will pass the struggle on to her, so she may continue it.”
This passion for justice, together with approaches like Citizen Voice and Action, offer a more hopeful future for Bhumika and others threatened by the pain of HIV and AIDS.
Health care for pregnant women and infants
This success story is recently narrated by group of women who are resident of a village called Dingerhedi (alternatively known as Dingerheri) on how Citizen Voice and Action approach was used to improve the provision of health services particularly those pertaining to pregnant women, infants and children of the community. (Story compiled by Itunu O Kuku – Student of Institute of Development Studies Geneva March 2012) Dingerhedi is located approximately two and a half hours outside of New Delhi in the state of Haryana in northern India. World Vision conducts its community development work through Area Development Programs (ADPs) that target specific geographical regions of the country. Dingerhedi is geographically located in the Mewat region and was thus under World Vision’s Mewat ADP which was operational between 1998 and 2010. The Mewat Area Development Program was phased out in 2010 as per World Vision’s policy of limiting program interventions to 12-15 years to encourage sustainability in the communities. Though the project had been phased out the regular monitoring activities of Citizen Voice and Action are still carried out by the community.
The group narrated several examples emerged after citizen voice and action intervention in their village. Out of many good examples here is one.
The village group of women narrates that prior to citizen voice and action intervention, villagers were unaware of the various government programs and schemes targeted at ameliorating maternal and infant health. Their lack of awareness meant that they were unable to avail of these services that were within their reach and free of charge. The first training that the villagers undertook as part of Citizen Voice and Action was in 2008. The training instructed villagers on the rights and entitlements they had as citizens and the standards that they could expect from their government. This education of citizens included information on services available especially for pregnant women. Empowered by this knowledge, villagers then proceeded to demand these services as well as monitor their quality.
The group shared one concrete example to illustrate this. The government of India provides a free ambulance service to transport pregnant women from the village to the hospital to deliver safely. In addition to this, the government offers a sum of 1’500 INR (29 USD) to all pregnant women who gave birth in the government birthing centers, in an attempt to encourage safe institutional deliveries in hospitals (as opposed to risky deliveries carried out traditionally).
Prior to Citizen Voice and Action initiative most of pregnant women were completely unaware of the monetary compensation available to them if they delivered institutionally. Some were aware of the ambulance service and availed of it but were unaware that it was free of charge and were made to pay exorbitant fees to the ambulance driver. It is because of their lack of knowledge most opted to simply stay at home and deliver their babies with the aid of traditional midwives who charged money for their services. These midwives charged money in a discriminatory manner in line with the traditional culture exist in village which values boys over girls, demanding 500 INR (10 USD) for delivering a boy and 300 INR (6 USD) for girls. Now that the villagers are aware of the existence of the free ambulance, they readily avail of it. Now not only do they no longer pay unnecessary fees for child birth but they are actually receiving compensation for having safe deliveries in government health centers.
Changes from within
All these stories of change stand out because changes were not brought from outside but from within, when people empowered with knowledge and demanded their rights. When people are educated on rights and motivated to fight their own fights, then change starts happening and it is sustainable. Today our development approach requires integration of rights based approach to allow people know their rights and ensure their responsibility to act. Citizen Voice and Action is a systematic approach having inbuilt tool for social accountability at the local level. World Vision India has success used this tool in many villages where people have story to tell. It is also true that all stories have flip side, where for every major change they have to go through difficult times and process. This means doing advocacy is not easy task and sometimes results are not immediate however the changes or results are sustainable.
Citizen Voice and Action emphasizes community development practices such as participation, inclusion, ownership and sustainability. The practical implementation of Citizen Voice and Action must be flexible and respond to local situations so it will look different in different situations. However, through practical experience in the pilot programs, we have found a number of linked core elements which should be included in all situations. These are information, voice, dialogue and accountability:
- Increased access to, and use of, government information to inform citizens’ choice and action.
- Increased opportunity to share information and generate knowledge within the community about the performance and reform of public services.
- Increased opportunity for citizens to actively engage in and influence decisions that affect their lives. Increased capacity to engage in advocacy to demand answers from those in power.
- Increased dialogue; talking and listening with a view to reaching shared understanding, repairing and strengthening relationships and creating understanding and collaborative partnerships, particularly with those in power.
- An increase in responsibility and responsiveness of power holders and duty bearers to those they serve, so they carry out and fulfill their roles and responsibilities to citizens.
*Ashish Masih works as Community Based Performance Monitoring Manager with World Vision India, based in Faridkot, Punjab. He facilitates the “Citizen Voice and Action” program, working closely with the community. http://www.worldvision.in/1452, Contact: firstname.lastname@example.org, Faridkot_india_adp@wvi.org
Acknowledgement: I thank World Vision India for providing me opportunity to present Citizen Voice and Action. I acknowledge and thank the contribution of Mike Nilson from World Vision Switzerland for opening opportunity to participate and his support. Thanks to Helena Zweifel for providing international platform for CVA presentation and article.