Inclusive participation of persons with disabilities in health risk management – Guatemala - PAHO/WHO

In 2020-2021, Guatemala was not just coping with the COVID-19 pandemic, the country was also experiencing the devastating long-lasting effects of hurricanes ETA and IOTA.

The COVID-19 pandemic highlighted the invisibility of People with Disabilities (PWDs), the widening exclusion gaps, and exacerbated the lack of an inclusive approach in health emergency response. An indicator of this situation is that many essential health services offered during an emergency are not accessible to PWDs. As a result, PWDs are two to four times more likely to die in an emergency situation. Around 15% of the world's population lives with a disability, in the Americas, 9.44% of the population has a disability. In Guatemala, 10.38% of PWDs live in conditions of poverty or extreme poverty.

A human rights approach to ensure the inclusion of people living with disabilities in the health system, and their participation in the construction of inclusive programs and policies.

In order to strengthen the participation of PWDs in the preparation and humanitarian response plans and inclusive health risk management actions, PAHO/WHO office in Guatemala collaborated with the civil society organization Guatemalan Association for Persons with Disabilities-Manuel TOT (AGPD), a member of RIADIS (The Latin American Network of Organizations of Persons with Disabilities & their families). The focus of the project in Guatemala also included a human rights approach to ensure the inclusion of PWDs in the national health system, their universal accessibility to health services, and their participation in the construction of inclusive programs, policies, plans, and projects.

This initiative was possible thanks to the financial support of the COVID-19 Solidarity Response Fund, through which the World Health Organization (WHO) provided direct financial and technical support to 54 local civil society organizations (CSOs) in 40 countries, serving to over 80 million people in situations of vulnerability, including persons with disabilities. The aim of this global pilot initiative from WHO was to streamline and scale up the involvement of civil society and communities as equal and integral partners to the national COVID-19 response and recovery strategies.

“The Coalition seeks to empower PWDs and the civil society organizations and institutions that support us, by offering guidelines, and trainings to improve our lives and avoid greater risks, especially in health.”

Nora Leiva, The Guatemalan Association for Persons with Disability “Manuel Tot” (AGDP)

Nothing about us, without us.

Thanks to PAHO/WHO Guatemala technical coordination, a temporary mechanism called the National Coalition on Inclusive Risk Management, was established and included partners such as the Ministry of Health, 24 civil society organizations (CSOs) representing PWDs, and a range of public institutions and relevant development actors related to disabilities, health management and humanitarian aid such as the National Coordination for Disaster Reduction, the National Council for the Care of Persons with Disabilities and Guatemala’s Red Cross.

As a result of this National Coalition, the National Technical Roundtable for Strengthening the Inclusion of Persons with Disability in Health Risk Management, a permanent participatory governance structure, was developed. This National Roundtable is led by the Ministry of Health, CSOs, and the same partners of the Coalition to promote the coordination among the different stakeholders and ensure that risk management plans comprehensively include the needs and experiences of PWDs. This inclusive governance mechanism centered on Health and Risk Management is the first of its kind in Guatemala.

"Our rights approach is based on 'nothing about us, without us'.
We are asking for barriers to be removed and allow us
to mobilize ourselves, get jobs, study, and live a normal life."
Kathy Pico, Public account and athlete (Person with disability)

A Ministerial agreement to formalize this Inclusive Technical Roundtable was approved in January 2022 by the Ministry of Health of Guatemala. This agreement will ensure that the National Roundtable has continuity and sustainability to create inclusive programs, plans, and projects in the short, medium, and long terms.

“The participation of PWDs and the civil society organizations that represent them in the processes of building health risk management plans is an advantage, a big step forward for us at the Ministry of Public Health and Social Welfare [Ministry of Health]. It will allow us first, to build our plans based on the needs and experiences that persons with disabilities are living on a daily basis when accessing health services and in situations of emergencies or disasters, and second, it will allow us to respond based on this information.”

Virginia Herzig, Risk Management Coordinator, Ministry of Public Health and Social Welfare of Guatemala

INGRID-H methodology to improve health care access for PWDs

In order to better understand the barriers faced by PWDs in accessing healthcare and in participating in health risk management governance structures in the COVID-19 context, this initiative also included a research component. Data analysis showed that one of the main needs in Guatemala is to improve the level of inclusion of PWDs in health disaster risk management, particularly in hospital preparedness and response to emergencies and disasters.

To this end, PAHO supported the Ministry of Health in implementing an evaluation-action tool called Disability Inclusion in Hospital Disaster Risk Management Methodology (INGRID-H for its Spanish initials). This was done through "Train the trainers" workshops in 6 hospitals, with the attendance of a multidisciplinary team from different institutions: 126 CSOs members representing PWDs; 56 representatives from the Ministry of Health, Guatemalan Red Cross, and the National Coordinator for Disaster Risk Reduction; 56 representatives of the National Council for the Care of PWDs; and 39 representatives from Guatemala’s Institute of Social Security. Guatemala is the first country in the Americas to conduct this type of workshop in the effort of strengthening a team within the MoH that can scale and replicate the implementation of the INGRID-H methodology in the other hospitals in the health care network.

“ Having [this] methodology for the inclusion of people with disabilities in risk management within our hospitals is very important because in this way we will be able to bring to life what the Convention on the Rights of Persons with Disabilities tells us and what the 2030 Agenda states "nothing about us, without us".

Dr. Karina Rodriguez, Hospital Medical Director of the Rehabilitation Hospital of the Guatemalan Institute of Social Security

Changing the approach to disability will allow the participation of PWDs in the construction of inclusive programs, plans, and projects so that this target group gets quality health services appropriate to their particular needs. This country project is part of the lessons learned on how to improve disability within inclusive health systems and communities that are resilient throughout outbreaks.

This story reflects activities supported by WHO’s Global Pilot Initiative in engaging with Civil Society Organizations in response to COVID-19. For the region of the Americas, PAHO led the initiative in collaboration with 7 CSOs in 4 countries (Guyana, Panama, Ecuador, and Guatemala). With the financial assistance of the COVID-19 Solidarity Response Fund, WHO provided direct financial and technical support to 54 local CSO in 40 countries, serving over 80 million people in situations of vulnerability.

Health Emergencies

Health Emergency and Disaster Preparedness