To introduce the Disability Inclusive Helpdesk’s evidence digest on inclusive health, Susie Rodgers (Technical Specialist Advisor in Disability Inclusion in Global Health) spoke to Dr. Alarcos Cieza, Unit Head of Sensory Functions, Disability and Rehabilitation at the World Health Organization (WHO), about the WHO Resolution on the Highest Attainable Standard of Health for Persons with Disabilities, the effects of the COVID-19 pandemic, and the upcoming Global Disability Summit.
Susie: With the WHO Resolution on the Highest Attainable Standard of Health for Persons with Disabilities adopted this year, what do you believe are the key areas of focus for this resolution?
Alarcos: The landmark resolution was adopted by the Member States of the World Health Assembly, the main governing body of WHO. The resolution is significant because it shows Member States are interested to move the agenda of disability inclusion in the health sector forward. The Resolution also called for WHO to implement the United Nations disability inclusion strategy (UNDIS). Countries have also requested a WHO global report on disability and health in which we will recommend what needs to be done to ensure persons with disabilities enjoy the highest possible standard of health. We’re writing this report in consultation with Member States, broad civil society and organizations of persons with disabilities and organizations working in disability. We also aim to provide Member States with the technical tools to enable implementation of our recommendations in a concrete way.
Susie: The COVID-19 pandemic has drawn exposure to how people with disabilities are being excluded from health systems globally. How do you think countries can better prepare to include people with disabilities in health emergency responses in the future?
Alarcos: The impact was devastating for persons with disabilities – at the peak of the pandemic they were at increased risk of getting the disease and of dying from it. And there were also other consequences from the COVID-19 response measures, such as not having access to personal assistants. If health systems were more inclusive, it would not have been so bad. This has been a wake-up call for Member States. Countries have realised that we cannot face the next pandemic this way. We need to make sure that decision makers in the health sector design policies and programmes with a disability lens on. This will create a more inclusive health sector that will benefit everyone, not only persons with disabilities. For example, we need to promote community services, not institutional services. The big lesson learned from the COVID-19 crisis is this: there is an increased risk of dying for people living in institutions in general. It is also important to recognise that that there are widespread concerns about safeguarding and abuse of people with disabilities in institutions, and this was present before the pandemic. We need to build people-centred community services that bring needed services to where people live and beyond institutions.
Susie: Can you think of any examples or case studies of good practice globally, where disability is fully integrated into health systems and programmes?
Alarcos: There are examples of some good programmes but progress is slow and there is no country where disability is “fully integrated” into health systems and programmes. The resolution, global report and UN disability inclusion strategies will all contribute to the progressive realization of inclusive health systems. One example comes to my mind: in one Pacific island, they are trying to integrate disability inclusion into the health system by training the health workforce on stigma and discrimination. This can make a huge difference in terms of attitudinal barriers that persons with disabilities experience in the health sector. Additionally, children with disabilities have a higher risk of being abused and discriminated against. Health workers are in a good position to notice the abuse and discrimination so it is important to enhance their understanding. However, it is frequently overlooked.
Susie: You recently started a series of forums on disability inclusive health, run by the WHO. What do you hope to achieve with these forums?
Alarcos: There has been a lack of dialogue between the health sector and the disability sector and as a result, we understand each other less and less, and are getting lost in translation. These forums are important in building mutual understanding and moving forward together. Capacity building of OPDs and the health sector is also very important. On the one hand persons with disabilities need to know how things work and how systemic change can be created in the health sector. On the other hand, the health sector need to learn that disability inclusion is about addressing needs and requirements of persons with disabilities so that they can benefit from health services and public health interventions. We need to work on a common language and common ground. We also need advocates that will champion our cause within the health sector, as well as policy makers, service providers and researchers.
Susie: Do you have any thoughts around ambitions on inclusive health at the Global Disability Summit in 2022?
Alarcos: We need to bring disability inclusion high into the agenda of the health sector. I’d like to see greater political priority given to it. If you go today to officials in the ministry of health and talk about disability inclusion, very often they will say, “Sorry, this is not in my mandate, this is part of the ministry of social affairs or it is the agenda of the disability council or whatever other organism.” We need to change that. If there is political commitment things move forward, despite budget constraints. The health sector needs to take responsibility for disability inclusion when it comes to health service delivery. Bilateral donors and foundations invested in health also need to see disability inclusion as a priority, and while some do, many do not. There needs to be a transformation in thinking. The health sector also needs to consider persons with disabilities in all aspects, because when they hear disability, they are always thinking of prevention, such as in polio elimination or prevention of injuries. Prevention of diseases and impairments is important. But that’s not the agenda we’re talking about here. We are referring to addressing the barriers and discrimination that more than one billion people with disabilities experience on a regular basis when accessing health services. If I would have only one wish for all ministries of health, I would ask that they actively engage, consult and include, representatives or organizations of persons with disabilities in decision making related to health policy, programming and service delivery.