Inclusive Evaluation Study for Disability Inclusive Health Care in YAKKUM’srural and urban hospitals in Java and Sumatera

Abstract

The Christian Foundation for Public Health (Yayasan Kristen untuk Kesehatan Umum or YAKKUM), with support from Bread for the World (Brot für Die Welt or BfDW), implemented a health-care project in which our hospitals were facilitated to be more inclusive by applying inclusivity principles in six managerial domains: governance, services, human resources (HR), finance, infrastructure and networking. Four target indicators were achieved: innovating hospitals to provide more-inclusive care; increasing the potential for replication by other health-care institutions; increasing the engagement of people living with disabilities in community-based programmes; and increasing partnerships with other stakeholders. The project engaged 12 hospitals and clinics, 14 community-based health programmes facilitated by people living with disabilities, and achieved a 75% increase in partnerships. This evaluation study has been designed to measure how the disability-inclusive principles have been implemented and whether they have been able to create change. To ensure an inclusive approach in the research, people living with disabilities, representing patients and stakeholders, will be meaningfully engaged in research-tool development, enumerator training, data analysis and producing written case study reports.

Introduction

The inclusive hospitals project was implemented by YAKKUM, targeting rural and urban areas in Java and Sumatra, Indonesia, to pilot health-care services that have a disability-inclusive approach. At a national level, the Indonesian Ministry of Health has launched a roadmap of disability-inclusive health care which addresses the physical and information barriers; capacity building for health-care personnel to increase awareness and knowledge of disability; participation of people living with disabilities; and data management and budgeting.

As the implementing organization, YAKKUM effected a whole cycle of project management. BfDW financed the project. The YAKKUM Rehab Centre and the Christian Blind Mission (CBM) provided references for capacity building. The six managerial domains within the disability-inclusive framework were: governance, services, manpower/HR, finance, infrastructure and networking with external stakeholders. As the end of the programme-implementation stage approached, it was deemed necessary to evaluate how the disability-inclusive principles had been incorporated into the hospitals’ management system, how change had been created, and whether there were any gaps that needed to be addressed. It is important to ensure such evaluations engage people living with disabilities, patients’ representatives, caregivers, and other stakeholders, as this is what will make a difference compared to other research approaches. This is consistent with the notion of ‘nothing about us without us’.

Who should benefit?

YAKKUM initially implemented this model in Central Java and Yogyakarta, and subsequently in Lampung, Sumatra.

Following the launch of the national roadmap for inclusive health care by the Indonesian Ministry of Health in 2019, relevant actors at the local level need to take concrete action to achieve the targets. The World Health Organization (WHO) has estimated that 80% of people living with disabilities in developing countries are under-privileged and experience conditions that hinder them from accessing their basic rights to health care, education and employment. Around 21.6 million people living with disabilities have been registered by the Indonesian Ministry of Social Affairs. Coronavirus disease 19 (COVID-19) further compounded these problems, as many funds intended for use in capacity building for health-care personnel, upgrading health-care equipment, increasing accessibility and so on did not materialize when financial resources were focused on dealing with the pandemic. This has delayed progress towards meeting the targets of the national roadmap for inclusive health care and achieving the United Nations Sustainable Development Goals (SDGs).

Engagement

Government health offices at district and province levels, community health centres, organizations for people living with disabilities, rehabilitation centres, and faith structures such as churches have engaged with our project. Their input has included setting and consulting on policy frameworks; assessing the needs and consulting people living with disabilities; mobilizing faith-based resources and support; and carrying out community service and research by students.

Research

YAKKUM holds awareness sessions at both management (including board member) and staff levels. Twelve hospitals and one clinic have been facilitated to carry out analysis using an ‘Inclusion Card’ covering the six domains or aspects of management that serve as baseline metrics to measure the inclusion gap.

The baseline data have been used to develop a workplan for improving disability inclusion in each hospital and to address governance, service management, HR management, budgeting, infrastructure management, and partnering and networking with other organizations. 

In terms of governance, the boards have launched an inclusion policy. In terms of service management, there have been innovations to train caregivers in assisting people living with disabilities. In terms of HR management, there has been large-scale sign-language training for frontline service providers, including medical doctors, and regular ongoing courses on disability inclusion are planned. In terms of finance management and budgeting, YAKKUM hospitals finance at least one inclusive service as part of their corporate social responsibility (CSR). In terms of infrastructure management, there has been increased accessibility to hospital facilities. In terms of networking and partnership management, every hospital now has partnerships with people living with disabilities and their support organizations.

In all of these steps, the participation of people living with disabilities has been ensured by facilitating their capacity building in leadership activities, programme planning and public speaking.

The testimonies of the people living with disabilities and their families who have participated in this initiative indicate that they have felt respected and protected. We have documented an increase in the number of patient visits. This has been attributed to factors including improvements in health-care workers’ basic understanding of disabilities and related terminology, which have led to better protection and respect of the rights of people living with disabilities, improved policies, and mutual cooperation and networking activities with relevant stakeholders such as churches, academic institutions, local populations, and community-based organizations.

Some of the false assumptions revealed by the work include the idea that a disability-inclusive approach will only benefit people living with disabilities and will require a lot of resources.

Translating into impact

Several impacts have been noted so far. 

First, YAKKUM hospital management and staff members have been able to discuss the principles of disability inclusion and translate them into practice with respect to governance, service management, manpower, finance management, infrastructure management and networking and partnership management.

Second, innovation and capacity-building measures have been put into place to enable our hospitals to provide more-inclusive services.

Third, more people living with disabilities have participated meaningfully in health-care programmes in the community.

Fourth, more partnerships have been created to improve disability-inclusive care including collaborations between academic institutions and faith-based organizations such as churches and other religious institutions.

Patients, caregivers and stakeholders have benefited from capacity building through the project. Increased awareness, knowledge and practices related to disability inclusion within our hospitals have increased access by people living with disabilities to health-care services.

The metrics and scores that constitute the baseline and progress-monitoring data collected in each hospital will continue to be assessed during the evaluation period and serve as an endline measure of overall improvement.

This approach is highly scalable. The training modules are adaptable and are developed based on consultations with people living with disabilities. Government policies regarding disability-inclusive health care can ensure that hospitals, clinics and other institutions appreciate the need and urgency to put inclusive measures into practice. These can be implemented more widely both within and outside of YAKKUM hospitals to create concrete models of inclusive health care and improve the access of marginalized groups, especially people living with disabilities.

Our plan is to roll out this model of inclusive health care to other locations, with the specific focus tailored to the local context and needs—so, for instance, in areas with a high prevalence of mental illnesses, inclusive mental-health care will be prioritized and enhanced.

The ultimate goal is to increase the access and participation of people living with disabilities to both primary and advanced health care.