In 2019, the provincial government of Nepal’s Province 1 decided to implement the Disability Prevention and Rehabilitation Program to strengthen existing healthcare in the region and prevent neonatal and childhood disabilities. The program, developed in collaboration with the provincial government, local municipalities, and the Karuna Foundation, aims to reach 108,000 pregnant women, 786,000 children under the age of ten, and 78,000 people with disabilities in Province 1 by 2025.
Deepak Raj Sapkota, executive director of Karuna Foundation Nepal, speaks to Nepal Live Today’s Rhishav Sapkota about the Foundation’s program in Province 1 and how local systems can be strengthened to prevent neonatal and childhood disability.
What inspired you to establish the Karuna Foundation?
In 2007, I was considering establishing a women’s and children’s hospital. I met two people from the Netherlands who were looking to work in the area of child disability prevention in Nepal. That struck me as a good starting point for establishing a hospital. I was looking for work as well. To make ends meet, I needed to work. I was the Director of the Central Child Welfare Board (CCWB) of the Nepali government, a statutory board established in 2049 under the Children’s Act 2048 (1992).
Because of my exposure to the health challenges faced by mothers and children during my term, I was tremendously inspired to run a hospital after it ended. I imagined that this may be the start of my journey toward my ultimate goal of running a hospital. That is how I became a member of this organization. At the time, the name wasn’t Karuna. One of these Dutch people’s daughters suffered from spina bifida, spinal cord disease. They discovered this during the pregnancy but did not choose to terminate it. When I met her, she was twelve years old. They realized that if they had terminated the kid, they would not have found happiness that their daughter brought to their home. She underwent numerous treatments but continued to live her life like any other twelve-year-old would. She is a practicing nurse now.
They were debating where to travel to work on this issue, and Africa was on their mind. We got together and decided to work together.
How does the Foundation intend to address childhood disability in Nepal?
We began by working in an INGO format from 2007 to 2015. In 2016, we transformed it into a Nepali NGO. Karuna’s main goals are the prevention of childhood disability including secondary prevention and rehabilitation. Even after birth, the child may develop disabilities related to growth, vision, hearing, and other factors.
The program provides screenings for these defects prior to birth. It may take up to six months for a baby to fully hear and understand a variety of sounds, for example. This is frequently overlooked, and parents only become aware of it when intervention is no longer possible. There is a simple technique for determining this immediately after birth using an Otoacoustic Emissions (OAE) Machine.
It is widely assumed that fifty percent of birth disabilities can be avoided. As a result, even if precautions are taken, children will be born with defects. Interventions can be further taken to prevent further development of these disabilities even if they couldn’t be prevented before birth. Through community rehabilitation, we assist them in living a dignified life.
Third, and most importantly, we work to improve the system. We have concluded that projects brought about by external partners such as INGOs and NGOs can provide short-term benefits to those in need but cannot strengthen the system.
What do you believe are the major structural barriers to preventing childhood disability in Nepal, and how does the Foundation address them?
In Nepal, we have quite progressive disability policies and rules. It is more a matter of strengthening the delivery system so that those policies can be implemented.
We do not intend to establish a parallel delivery system alongside government agencies. Instead, we work to strengthen the capacity of local governments. There are many discouraging factors, but our overarching goal is to help strengthen the system that government bodies have in place.
Another mode of operation we use is a cost-sharing model. We currently only work with Province 1 under three conditions. The first is that the cost is shared by us, the provincial government, and the local government. Second, the Province government should take ownership of the program and prioritize it so that it can continue to function even after Karuna leaves.
Third, because local governments are autonomous entities, they have the right to reject our program if it does not align with their priorities.
The Province 1 government had opened a bid for this program, with the cost divided equally among the three stakeholders. We made a bid and won. Because it is transparent, it is a much better model.
What were the challenges you encountered while attempting to scale the program across Province 1?
While scaling this project, we encountered numerous challenges. We don’t have enough information about people with disabilities. The government has classified disability into ten categories. That is insufficient because they do not address the wide range of disabilities that exist. In Norway, a person who has undergone open-heart surgery is also considered to be disabled. The definition of disability needs to be more nuanced.
It is widely assumed that fifty percent of birth disabilities can be avoided. As a result, even if precautions are taken, children will be born with disabilities. Interventions can be further taken to prevent further development of these disabilities even if they couldn’t be prevented before birth.
An example of how a simple but effective policy is not implemented: the government incentivizes pregnant women to have at least four antenatal checkups. In Nepal, it has not yet become the norm. The Nepal government, through the Aama Program, even provides a financial incentive to pregnant women to undergo such checkups in order to detect any complications in their pregnancies. This policy will also be implemented through our program.
A couple trying to conceive can start taking folic acid tablets the day they decide to conceive, with the mother continuing to take it for three months after the baby is born to prevent neural tube defects such as spina bifida, hydrocephalus, claw feet, and cleft lip and palate. A folic acid tablet costs one rupee. However, there is still a lack of awareness about these simple measures, which we hope to address in Province 1.
We are working on providing the bare necessities for children with disabilities in Nepal.
We are also interested in creating profiles of people with disabilities in Province 1. In the next three years, we hope to compile a collection of profiles that will aid in the implementation of future policies.
What are the goals you hope to achieve by the end of this collaborative project with the Province 1 government and local governments?
This project began in 2019 and was supposed to end in 2025, but we believe we will extend it by a year because of the pandemic. Sunsari, Morang, Dhankuta, Bhojpur, Sankhuwasabha, Panchthar, and Illam are among the seven districts in Province 1 where we are working.
By the end of this project, we hope to have accomplished the following in the districts where we are working.
The Province 1 government and the local governments are each contributing two-thirds of the project’s cost. We intend to cut costs as the project progresses because the majority of resources will be spent on addressing the accumulated issues in the field of child disability. Our expectation, as well as the government’s commitment, is that the program will be continued even after Karuna leaves.
We anticipate that all conceiving couples will begin taking folic acid supplements when they decide to have a baby so that we can address neural tube defects in infants, that the pregnant mother will receive free antenatal checkups before birth, that all deliveries will be performed under the supervision of skilled delivery attendants, that all babies will receive vaccines and nutrition after birth, and that all infants will be screened for birth defects.