February 20th, 2025 – The Missing Billion Initiative has published a new report on the status of investments in disability-inclusive healthcare — and found that there are urgent needs to improve visibility on disability-inclusive funding and to increase funding that is being allocated to making health services inclusive.

The report "Investing in health justice: Increasing visibility of funding dedicated to making health systems inclusive for people with disabilities" brings attention to the critical underfunding of disability-inclusive health systems and provides actionable recommendations to help funders make their work more inclusive of people with disabilities.

The report was produced with support from the Clinton Health Access Initiative and Special Olympics International.

1.3 billion people globally—16 percent of the world’s population— live with disabilities. People with disabilities can expect to die 10 to 20 years sooner than people without disabilities. Despite the urgent need to address these health inequities, the report shows a staggering underfunding for disability-inclusive health across OECD member countries.

By carrying out a comprehensive analysis of health sector funding data from the OECD Creditor Reporting System, the report found that only 0.4 percent of global development assistance for health was allocated to making health services inclusive between 2013 and 2022.

By carrying out a comprehensive analysis of health sector funding data from the OECD Creditor Reporting System, the report found that only 0.4 percent of global development financing for health was allocated to making health services inclusive between 2013 and 2022. There is an opportunity for all types of donors – governments, private philanthropic foundations, multilateral donors – to increase health funding to be disability-inclusive. The authors also stress the importance for all types of donors to implement the OECD “disability policy marker” for more accurate data going forward.

“The report raises awareness for the importance of investing in health equity. Going forward, better, disability-specific data will be key to monitor relevant funding and identify good practices," said Dr. Ariane Hildebrandt, Director General for Global Health, Equality of Opportunity, Digital Technologies, and Food Security at the German Federal Ministry for Economic Cooperation and Development. “Germany is a strong supporter of disability inclusion in health. We thank the Missing Billion Initiative for this important contribution ahead of the Global Disability Summit 2025 in Berlin.”

Co-authors also provide over 20 actions the funding community can take—shared by funders themselves—and highlights strategies already in use that could be replicated to integrate more disability considerations into global health funding.

“KOICA sets as a priority objective the strengthening of support to vulnerable groups like persons with disabilities, with main projects revolving around health rehabilitation for persons with disabilities,” said Eunju Jeong, Digital, Health and Social Development manager of the Korea International Cooperation Agency. "This novel report provides valuable good practices we can observe from our peer funders as we cooperate in implementing disability-inclusive programs."

 Funding disability-inclusive health is not just a matter of equity, it is essential for achieving global health goals. Without significant investments in making healthcare systems inclusive, Universal Health Coverage and Sustainable Development Goal 3 will remain out of reach. With the Global Disability Summit scheduled for April 2025, this report presents a pivotal opportunity for stakeholders to mobilize resources and commitments.

About the partners

Missing Billion Initiative

The Missing Billion Initiative is a catalyst for system change aiming to improve the health of 1.3 billion people with disabilities. It gathers data and evidence, develops solutions and partners with health actors to implement change at scale.

Clinton Health Access Initiative

The Clinton Health Access Initiative, Inc. (CHAI) is a global health organization committed to saving lives and reducing the burden of disease in low- and middle-income countries to create and sustain high-quality health systems that can succeed without our assistance. For more information, please visit www.clintonhealthaccess.org.

Special Olympics

Founded in 1968, Special Olympics is a global sports movement to end discrimination against people with intellectual disabilities. We foster acceptance of all people through the power of sport and programming in education, health and leadership. With over four million athletes and Unified Sports® partners and one million coaches and volunteers in 200 countries, Special Olympics delivers more than 30 Olympic-type sports and nearly 50,000 games and competitions every year.

The Convention on the Rights of Persons with Disabilities affirms the right of persons with disabilities to the highest attainable standard of health, free from discrimination. In alignment, Africa's Protocol on the Rights of Persons with Disabilities reinforces this principle, emphasizing the provision of accessible health services. Mozambique has built on these provisions to guarantee universal healthcare for persons with disabilities in its constitution.

The Government of Mozambique, with support from the World Bank, partnered with the Missing Billion Initiative (MBI) to assess the health system and pilot potential solutions for better inclusion of persons with disabilities in the health system.

Figure 1 SLA Inception Workshop

The Ministry of Health Mozambique (MISAU) deployed its critical programs and department personnel to form a Task Team. An inception workshop was held on February 29, bringing together stakeholders implementing disability and health programs from the civil society and social impact sector. This workshop kicked off the assessment work – through the system-level assessment (SLA) toolkit – taking the Task Team through data sources mapping, evident siloed disability-inclusive health initiatives, and lack of coordinated communication at the system level.  was adopted to better understand system-level challenges in healthcare for people with disabilities. As a result, an SLA report was developed and disseminated later in April. 

Findings from the SLA report

The SLA report recorded several positive findings: Mozambique adopted strong policies to protect the right to health for persons with disabilities, building on the National Disability Action Plan and Disability Rights Law. In addition, persons with disabilities are recognized as key targets for services under the HIV/AIDS Strategic Plan and cross-ministry coordination of bodies on disability. MISAU collaborated with WHO and Light for the World to conduct a systematic assessment of the rehabilitation situation in the country. MISAU also worked with CHAI and UNICEF to assess the capacity to implement assistive technologies in Mozambique. There is a coordination mechanism that addresses both the rights of people with disabilities and rehabilitation issues. Mozambique recorded a high score for the number of rehabilitation professionals.

Noted as opportunities, however, are internal leadership, specific budget allocation for disability inclusion actions, disability-disaggregated data in national health reports, a strengthened role of OPDs in advocating for relevant decision-making platforms, and staff training on disability-inclusive healthcare.

Piloting of solutions

Of the 18 priority actions defined in the report, MISAU selected two to be piloted. These are: training healthcare workers and strengthening capacity for Organizations of Persons with Disabilities (OPDs). MISAU decided to address the lack of disability inclusion content in the training of health professionals, starting with community health workers (CHWs). To address this, content on disability was corrected or integrated in 11 of MISAU's existing training manuals, and relevant images were also updated.

20 national MISAU Master Trainers and over 100 provincial trainers received a training on disability, with an agreed scale-up training for over 1,000 CHWs that started in September 2024. When asked about the most important thing learned in this training, one of the participants said,

"Incorporating basic sign language communication so healthcare professionals can communicate with the deaf, ensuring that each health unit has at least one healthcare professional with experience and training to attend to people with disabilities, not forgetting infrastructure that accommodates people with special needs."

The success of this intervention led to the developments of a national training curriculum for trained professionals. MISAU and other stakeholders are collaborating on development of the upcoming 2025 -2034 National Health Sector Strategic Plan.

On strengthening capacity for OPDs, MISAU aims to have the Mozambican Forum of Associations of Persons with Disabilities (FAMOD) become actively involved in the planning, budgeting, monitoring, and evaluation phases of MISAU programs. In this context, a memorandum of understanding involving FAMOD and MISAU was drafted, based on an existing model used with health stakeholders in Mozambique. A mapping of relevant health programming platforms that collaborate with different programs within Ministry of Health sub-sectors was completed, and will support FAMOD's advocacy and mobilization of resources strategically.

Last week, the Missing Billion Initiative, Lwala Community Health Alliance, and SCOPE Impact kicked off the first phase of a community health worker (CHW) training project to improve disability inclusion in healthcare.

This project aims to improve care delivery for people living with disabilities by equipping community health workers with the knowledge and skills they need to provide inclusive, quality healthcare.

Leveraging SCOPE’s human centered design process, Lwala’s extensive local networks, and the Missing Billion Initiative’s existing expertise in disability-inclusive healthcare and training, this project is designed to be both community-driven and scalable. It is designed in multiple phases:

• Discovery – expert interviews and meetings with key stakeholders (e.g., CHW, people with disabilities, local government officials), and workshops with community health workers to understand needs

• Pilot – a contextually-tailored MBI training will be delivered to  about 400 CHW in Migori, Kenya, leveraging a train-the-trainer approach

• Evaluation – in addition to standard pre-and post-training knowledge tests, we will conduct long-term follow up with CHW to understand impact and use of the knowledge and skills learned in the training

 This project is taking place in Migori, Kenya, where the partners will meet this week to begin the discovery phase of work.

One of our advisors shared why this collaboration is energizing, “This project is very important and it is coming at a critical time. I feel that this project might  usher in what I will call a paradigm shift so that in the future we might stop talking about "inclusion”. Inclusion means that there are people that are more privileged and have more rights than others.  We can reach a point where we are talking about justice not just inclusivity. Justice indicates people have equal rights to access all services.”

Another colleague from Lwala shared, “Work that you are doing here can progress international work and can be replicated,  it will really help the broader community.”

As the project continues, the Missing Billion Initiative and its partners will share updates on social media so please get connected on Linkedin. We would love to hear if you are doing similar work or have interest in funding/collaborating as we look to scale up.

This project was made possible by a generous grant from the Bayer Foundation.

Photo: World Health Summit

Disability-inclusive health and assistive technology were put on the agenda of the World Health Summit for the very first time. The session “Reimagining Universal Health Coverage to Leave No One Behind: Health Equity for Persons with Disabilities and Access to Assistive Technology as Key Drivers to Achieving UHC” was co-hosted by: ATscale, the Global Partnership for Assistive Technology; Clinton Health Access Initiative; CBM Christian Blind Mission; Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ); Missing Billion Initiative; and Special Olympics with support of the Federal Ministry for Economic Cooperation and Development of Germany.

Check out this brief report that highlights the key takeaways of the session and the experiences of disability advocates during the summit.

On the heels of new research identifying major gaps in disability health data, the Missing Billion Initiative and partners announce a new commitment to action at UNGA 78

September 18, 2023 — The Missing Billion Initiative and its partners today announced a Commitment to Action centered on accelerating disability inclusion in health systems globally during the Clinton Global Initiative (CGI) 2023 Meeting in New York City. The committing partners, include the Mission Billion Initiative, the McKinsey Health Institute (MHI), the Clinton Health Access Initiative (CHAI), the International Disability Alliance, and the London School of Hygiene & Tropical Medicine.

The two-year commitment aims to reduce the staggering 10- to 20-year life expectancy gap people with disabilities face compared to people without disabilities. This involves changing entire national health systems to ensure that people with disabilities can access the health services they need—from prenatal checkups to eye exams to urgent care, and beyond.

To do this, partners will work with global, national, and community stakeholders to design inclusive health systems that serve as case studies for scale in at least six countries. These case studies will help build a global coalition of health stakeholders, mobilize donors to pledge financial support, and cultivate the evidence base to inform action on disability inclusion.

The Commitment to Action comes on the heels of a new report published by the Missing Billion Initiative and MHI exploring major gaps in data about people living with disabilities, who represent 16 percent of the world’s population.

The missing billion: Lack of disability data impedes healthcare equity shines a light on how these gaps prevent healthcare professionals, policy makers, and other stakeholders from understanding lived experiences and present a barrier to achieving global health equity goals. The report offers actionable recommendations on better data collection and usage, including strengthening emergency health records, registries, and leveraging national censuses and household surveys to collect data.

“In a world where 1.3 billion people are living with a disability, inclusive and equitable health services are critical. Yet we know that this is not the case globally, at a foundational level due to missing data about people with disabilities,” said Ahmed Osman, associate partner and McKinsey Health Institute Geographical Leader. “Equity in health is a priority at the McKinsey Health Institute, and we are committed to advancing healthier lives for all. Whether one is operating from a healthcare organization, government, donor, or implementing organization, we all need to work together.”

“We cannot close in on global health equity without clarity on what health challenges people with disabilities face,” said Phyllis Heydt, co-founder of the Missing Billion Initiative. “Data is essential to provide greater clarity and move to action.”

“Creating equitable access to health services for individuals living with disabilities requires collaboration from stakeholders across global health systems,” said Jose Maria Veria, Director of Advocacy of the International Disability Alliance. “By bringing together a coalition of organizations dedicated to advancing inclusive healthcare, and with the strong involvement of organizations of people with disabilities, we are signifying our commitment to a world where every individual can get the healthcare they need and deserve.”

Read more details about the significant health access barriers and poorer health outcomes of people with disabilities in the latest Missing Billion report. Read more about the state of global health data on people with disabilities and where the health community should go from here on the MHI website.

About the partners

Missing Billion Initiative

The Missing Billion Initiative is a catalyst for system change aiming to improve the health of 1.3 billion people with disabilities. It gathers data and evidence, partners with governments and funders to implement change at scale, develops innovative solutions and mobilizes global health actors on disability inclusion.

McKinsey Health Institute

The McKinsey Health Institute (MHI) is an enduring, non-profit-generating entity within the firm. MHI believes, over the next decade, humanity could add as much as 45 billion extra years of higher-quality life, which is roughly six years per person on average —and substantially more in some countries and populations. MHI’s mission is to catalyze the actions needed across continents, sectors, and communities to realize this possibility.

Clinton Health Access Initiative

The Clinton Health Access Initiative, Inc. (CHAI) is a global health organization committed to saving lives and reducing the burden of disease in low- and middle-income countries to create and sustain high-quality health systems that can succeed without our assistance. For more information, please visit www.clintonhealthaccess.org.

International Disability Alliance

IDA is a global alliance of eight global and six regional member organizations representing over 1,100 organizations of persons with disabilities (OPDs) and their families from 182 countries. IDA’s work is primarily focused on promoting the effective and full implementation of CRPD and compliance by governments and the UN System through the active and coordinated involvement of representative OPDs at the national, regional, and international levels. IDA’s work is structured around the pillars of Human Rights, Advocacy, and Capacity Building, which mutually reinforce each other in thematic areas.

London School of Hygiene & Tropical Medicine

The London School of Hygiene & Tropical Medicine is a world-leading centre for research and postgraduate education in public and global health.

Clinton Global Initiative

Founded by President Bill Clinton in 2005, the Clinton Global Initiative is a community of doers representing a broad cross section of society and dedicated to the idea that we can accomplish more together than we can apart. Through CGI’s unique model, more than 9,000 organizations have launched more than 3,900 Commitments to Action — new, specific, and measurable projects and programs. Learn more about the Clinton Global Initiative and how you can get involved at www.ClintonGlobal.org.

Luthfi Azizatunnisa’ is a PhD student at ICED, LSHTM

What is your current role working on disability and health?

Currently, I am a PhD student. Back home, I am a teacher and researcher at the Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Indonesia and I am part of the Center for Tropical Medicine at the same university. As a researcher, my role is to generate evidence on disability and access to health care. As a lecturer, I teach epidemiology and health promotion, and raise awareness about disability among my students, future health professionals. When I graduate, I dream of developing a course on disability and health. In addition, I hope that in the future, I can integrate a disability-inclusive approach to infectious diseases or other fields of research and intervention. I believe that every health intervention should consider people with disabilities.

In your opinion/experience, what are some of the main barriers for people with disabilities in accessing health? 

I am a person with physical disability (a wheelchair user). Most of the barriers I experience are related to physical and financial accessibility. I have often found inaccessible health facilities with inappropriate ramps (too steep, without handrail, and slippery floor), toilets (too narrow, without handrail or red cord), medical equipment (non-adjustable beds), and reception tables (too high), especially at the primary care level. For example, I recently needed dental care, but my primary care clinic had no lift to access the dental service room, located on the second floor of the building. The health manager did not expect that a wheelchair user could need dental care services like any other person. Another physical barrier is the inaccessibility of public transportation. Therefore, I often have to allocate more resources to transport, such as taxis, to reach the health centre.

In terms of financial barriers, the coverage of assistive devices is very limited. A good, fitted wheelchair is expensive and unaffordable and is not covered by our national health insurance. The same applies to other assistive devices. An OPD in Indonesia compared the average salary of people with disabilities, the price of different assistive devices, and the national health insurance coverage. They found that there is a huge gap between what people with disabilities can afford and the level of national health insurance coverage. This means that most assistive devices are unaffordable for people with disabilities in Indonesia.

“Often, health workers believe that the health needs of people with disabilities are always related to their disability and that they are not capable of making decisions.”

Furthermore, stigma is a huge barrier to accessing healthcare. Often, health workers believe that the health needs of people with disabilities are always related to their disability and that they are not capable of making decisions. A sad but true reality that is still present in the community. Negative attitudes of family members also hinder people with disabilities from seeking healthcare, as family members feel ashamed of their disability or do not prioritise their health care needs.

What should your Minister of Health know about these barriers? What should they do to address this issue?

There have been many reports and evaluations on the health needs of people with disabilities and the barriers to accessing healthcare. The Ministry of Health has also developed a roadmap for inclusive healthcare. The governance and policy for an inclusive health system already exists, but its implementation needs to be monitored, evaluated, and strengthened. The policy needs to be translated and operationalized so that it is technically adopted at the grassroot level, for example through training of health professionals, technical guidance, or a budget allocation policy.

“The governance and policy for an inclusive health system already exists [in Indonesia], but its implementation needs to be monitored, evaluated, and strengthened.”

If you could change one thing about health care for people with disabilities, what would it be?

If given the authority, I would establish a policy of accreditation of health facilities, which should have staff trained in disability-inclusive health care and accessible health facilities (both physical infrastructure and information). In this case, I believe a top-down approach will be powerful in making these changes. With this policy, the demand for health worker training will increase and hopefully medical schools will also adapt their curricula.

What are you hopeful about disability inclusion in health going forward?

I hope that healthcare workers will be trained in disability-inclusive healthcare, and that this subject will be included in the curricula of medical, public health, nursing and other health schools. Furthermore, I expect that health facilities will be accessible, that health services will be affordable, and that health insurance will cover assistive devices. Although it is difficult to change the transport system, I hope that health services will be able to reach people with disabilities or provide them with closer care by strengthening Posyandu (health posts) and Puskesmas Pembantu (satellite primary health centres) in the villages. As a good practice example in Malang, East Java, a Posyandu has been designated for people with disabilities, where their health is regularly monitored and their health problems are treated.

What has COVID-19 shown and/or changed for disability inclusion in health?

In Indonesia, people with disabilities were one of the priority populations to receive COVID-19 vaccination through a massive campaign, which was endorsed by several ministries, presidential staff, and sub-national authorities. It also generated tremendous support from the private sector. The district health office, public and private hospitals, universities, private companies, OPDs, and many volunteers were involved in the implementation. OPDs were involved in the planning phase and in mobilising people with disabilities. The service provision arranged was very accessible, including an accessible health venue and transportation. One of the largest online taxi companies provided pick-up services. Volunteers were ready at every corner to help people with disabilities and sign language interpreters were available. After this valuable experience, hopefully by now, health authorities and health workers have improved their knowledge and awareness of how to provide inclusive health services.

Florence Ndagire is a PhD candidate at Makerere University

What is your current role working on disability and health?

I am working on access to maternal, sexual, and reproductive health rights for persons with disabilities in Uganda. Through my research, I am trying to establish whether health facilities, health services, and healthcare is accessible to persons with disabilities in Uganda.

In your opinion/experience, what are some of the main barriers for people with disabilities in accessing health? 

Barriers range from policy, attitudinal, and environmental to information access. Health policies, specially here in Uganda, have not been inclusive of persons with disabilities. There are no official guidelines for the provision of healthcare, for instance, in identifying needs of persons with disabilities and in ensuring an appropriate budget for the removal of barriers. Most people with disabilities have not received reasonable accommodations.

The cultural context in my country regards disability as a curse or a bad omen and it has many stereotypes and stigmas. Healthcare providers don’t want to treat people with disabilities, they see them as a problem. They ignore, shout, or say negative things about the kind of healthcare persons with disabilities are seeking, even when their health conditions have been explained to them. Another important challenge with health workers is their training curriculum. They have not learned about lived experiences of persons with disabilities or success stories. 

Healthcare facilities are inaccessible for people with physical disabilities and wheelchair users. They lack lifts, ramps, and rails. Inside the hospital, maternity beds and examination tables are inaccessible. Health information is not available in braille, large print, digital formats, plain language or easy-to-read formats. There are no sign language interpretation services to enable persons with hearing impairment to communicate with a health worker about the health conditions they have. I think all these barriers are coupled with the lack of a delivery strategy to ensure that the health policies are amended for persons with disabilities.

What should your Minister of Health know about these barriers? What should they do to address this issue?

Our Minister of Health should know that persons with disabilities have been left out of the health care system. We need to remove all the barriers associated with health care and first train all health workers in disability so they can recognize the different needs of persons with disabilities. Health workers should know that our individual needs require support and reasonable accommodation, and that comes with a budget requirement. When budget is available for disability, it should be compliant with the UN Convention on the Rights of Persons with Disabilities to make sure that persons with disabilities are catered for at all levels of health care. 

Further, the Minister of Health should know that sign language has been recognized as a language of communication and therefore sign language interpretation should be available at every hospital, to ensure that persons with hearing impairment will receive the adequate information. 

Finally, prescriptions should be available in accessible formats so that people with intellectual or psychosocial disability recognize the prescribed doses and take it appropriately.

If you could change one thing about health care for people with disabilities, what would it be?

Disability is central to health care, as most people with disability live on medications throughout their lifetime. Yet all is forgotten, when designing health programs. The one important thing we require is to make sure that the health care system involves persons with disabilities from the design, implementation, and monitoring and evaluation, and this is called universal health care. 

What are you hopeful about disability inclusion in health going forward?

I am hopeful that there will be strategies designed for all health centres to promote disability inclusion and all the unmet needs of people with disabilities will be addressed. People with disabilities will be consulted, asked for consent, and not given forced treatment, especially for people with psychosocial disability. 

What has COVID-19 shown and/or changed for disability inclusion in health?

COVID-19 has changed the healthcare landscape because governments had to find ways of addressing and preventing the pandemic.  

Persons with disabilities were negatively impacted. For example, the health centres for persons with psychosocial disabilities were transformed into COVID centres. These persons, who live on medication most of the time, were left out or feared getting in contact with COVID patients. As a result, most of them withdrew the psychotropic medicines, and this has caused severe disabilities. 

Overall, the guidance provided by the WHO was not time and context specific. They did not recognize the needs of persons with disabilities. Social distancing became physical distancing, even when people need a lot of support and care, especially those with visual impairment and people with physical disabilities. Even the people who have been supporting us were stigmatized, because carers need to sanitize wheelchairs and use their hands to support a person with disability. 

“I believe we became the forgotten group [...] the impact has been disproportionate, negative and to our most disadvantage”

I believe we became the forgotten group. The COVID-19 task forces and the humanitarian response measures care for every citizen, but persons with disabilities were forgotten. 

During the immunization process, disability was never prioritized as a condition or as a reason for vaccination in Uganda. Most people with disabilities have not been vaccinated. When testing for COVID-19, the statistics did not disaggregate data by disability, so it is not possible to know how many people with disability suffered from the disease, how many tested positive, and how many have died. I believe that the impact has been disproportionate, negative and to our most disadvantage.

PhD candidate at the University of Zambia, focusing on disability inclusion in the COVID-19 Response Strategy in Zambia

What is your current role working on disability and health?

As a researcher, my role is to contribute to evidence on disability and health. Based on thematic areas and recommendations which may arise, policy makers and other strategic partners may use this evidence base to make decisions regarding disability and engage more meaningfully.

“In my opinion, a person’s impairment may get more attention than a general health condition. In extreme cases of missed/poor diagnosis, they are referred to specialist service before ruling out other clinical conditions ”

In your opinion/experience, what are some of the main barriers for people with disabilities in accessing health?

Access barriers for people with disabilities in health are related to behaviours, perceptions, and assumptions of the health service providers and people with disabilities and their families. In my opinion, a person’s impairment may get more attention than a general health condition. In extreme cases of missed/poor diagnosis, they are referred to specialist service before ruling out other clinical conditions. Barriers are also around some policies, procedures, and practices. For example, policies that don’t give health workers enough time to provide a service for people with intellectual and mental health disabilities or having limited accessible transportation.

Regarding the physical environment, there have been attempts to have universal design in health infrastructure, but many older buildings and other health centres are still largely inaccessible. For instance, steps at the entrance, narrow corridors and doorways, high examination beds, and inaccessible toilets. Some hospitals may have elevators either constantly out of service or far from the clinic.

In terms of communication and information barriers, people with sensory impairments and learning difficulties may find it difficult to access healthcare. Most healthcare providers do not know sign language. It is difficult to simplify medical language to cater for people with intellectual impairments. In other instances, people with disabilities are unable to express themselves and may have to do so through another person- their caregiver who may not accurately voice their health concerns. Health education materials are also not readily available in the correct formats such as braille. Lastly but not the least, other barriers could be through inadequate access to technology for different types of impairments. The prices of most assistive devices are higher than the incomes of many people with disabilities and their household incomes. In other instances, new technologies and/ or providers don’t reach rural and peri-urban areas.

“The ministry ought to ensure universal design and training of health care workers in various skills […] Access is a right for people with disabilities, a human right, and we shouldn’t make it look like we are doing people a favour”

What should your Minister of Health know about these barriers? What should they do to address this issue?

I believe the Minister of health is aware of disability and health matters because of many years of engaging in international processes. The Disability Act No 6 of 2012 and the obligations it outlines makes it clear that disability and health is a recognized issue. People with disabilities are engaged in advocacy roles, so there is need to continually understand and appropriately engage the disability community on different health matters in achieving the idea of “leaving no one behind”.

Barrier removal should be planned for and implemented now rather than later. The ministry of health is trying, but there is need to continually question ourselves on reducing access barriers and deliver health for all, albeit incrementally. The ministry ought to ensure universal design and training of health care workers in various skills. Even if they start with a small group, so that when they are coming out of medical school, they will have this extra skill that will help them provide services to all people regardless of their disability status.

Although there aren’t enough resources at household and national levels to accommodate the many health technology needs of persons with disabilities, more partnerships are needed, to ensure that technology that is required for people with disabilities is delivered and spending beyond certain levels, catastrophic health expenditures, are averted. There is need to invest in research on disability and health. Additionally, data disaggregation by disability in routinely collected data needs to be done. We need to understand barriers to and facilitators of access to healthcare for people with disabilities. Access is a right for people with disabilities, a human right, and we shouldn’t make it look like we are doing people a favour.

If you could change one thing about health care for people with disabilities, what would it be?

That is a difficult question, because usually we have a “basket of things”. I think I would want to walk into any health center and access the service that I want, be it assistive device or just for general health care. Everything in one health center, one stop shop. I know that we hide behind using resources efficiently but at the end of the day how efficient are you if your services are scattered.

“There are great people out there that have knowledge and skills. We seem to disregard them, like they do not exist. But they do exist, and they have great ideas”

What are you hopeful about disability inclusion in health going forward?

To leave no one behind, we must challenge ourselves to get there, by ensuring people that have a need for specialist or general health services are catered for. I’m hopeful that eventually we will get better and not hide behind “COVID-19 has drawn us backwards”. I am hopeful that there will be more linkages, not just in terms of what we traditionally view as ways of dealing with disability where we just look at people with disabilities as people that need help but see them as the solution as well. There are great people out there that have knowledge and skills. We seem to disregard them, like they do not exist. But they do exist, and they have great ideas.

What has COVID-19 shown and/or changed for disability inclusion in health?

I think that we are still learning. Some of the learning points are that, to intervene in solving problems of pandemic proportions, everybody needs to be involved in any way that they can. So, if you look at the way disability matters were previously handled, if it doesn’t concern you, you don’t have a role to play, but if we can draw lessons from COVID-19 to say it affects us all, then it energises us all to want to do more.

Shilpa Das is a Senior Faculty member in Interdisciplinary Design Studies at India’s National Institute of Design where she focuses on human-centred design in global health.

What’s your current role working on disability and health?

As a person with a disability myself, I have a lived experience of disability. I have been working on disability from within academia. Writing and publishing. Working on outreach projects. Being part of disability collectives and organisations. I also teach a module on Disability Studies.

What are access barriers for people with disabilities in health you are perceiving/experiencing?

In developing nations, lack of programmes, awareness, lack of strategic communication for systematic change, awareness on disability issues, cultural prejudices carry over, institutional discrimination, lack of health programmes that target the disabled. So, they tend to be rendered invisible.

What is it that your Minister of Health should know about and address on this issue?

Change the perspective of how disability is perceived in the health paradigm as something less than human; as a deficit; lack or abnormality, as something that needs to be fixed; as burdensome on family and society.

What are you hopeful about disability inclusion in health going forward?

Not hopeful given the apathy showed in the budget for Department of Empowerment of Persons with Disabilities (DEPwD) was slashed from INR 1325.39 crores to INR 1171.76 crores. Moreover, the finance minister deducted the allocations for different schemes pertaining to the disabled community in Budget 2021.

What has COVID-19 shown and/or changed for disability inclusion in health?

How the pandemic has impacted disability inclusion in health remains to be seen as priorities of healthcare are different at the moment. But discriminatory practices are seen, for example when severely disabled people are left out of vaccination drives.

On World AIDS Day 2020 remember that 25% of people living with HIV have disabilities

“I entered the counselling room. There was a person, whom I was assuming was supposed to be counselling me. As I walked in I saw the health worker saying “Oh shame isumumu”, which means deaf and dumb. When I sat down it was very obvious that the health worker was uncomfortable, because she couldn’t communicate with me at all.” 

Meleste’s experience (as documented by the movie “knowing the unknown”) is not uncommon. He is a young gay man from Zimbabwe, and he has a hearing impairment. While reaching key population groups is recognised as critical for achieving 90-90-90 by 2030, people with disabilities are often left out. This neglect is an important oversight as one billion people worldwide have disabilities and there is a strong link between disability and HIV. As a matter of fact, at least 25% of people living with HIV have disabilities. People living with HIV often have hearing, physical or cognitive impairments, and developmental delay is common in children. 

Why is that the case and why does this matter? 

First, people with disabilities have a higher risk of HIV. That’s as a result of behavioural factors, such as higher frequency of sexual violence and paid sex, but also because people with disabilities face difficulties in accessing HIV prevention services and testing. For instance, people with disabilities are often excluded from sex education and are not supported in accessing sexual health services due to inappropriate assumptions that they are not sexually active. Lack of awareness of HIV among people with disabilities and accessible testing also hampers efforts to prevent transmission and to reach the target of 95% of people living with HIV being aware of their status.

And then, once a person with disabilities is HIV-positive they experience a range of barriers to accessing health services, as we described in the Missing Billion report from 2019. These barriers mean that people with disabilities who are HIV-positive are often excluded from HIV care, such as testing, or getting anti-retrovirals (ART) or treatment for co-infections. Consequently, people with disabilities will have a lower adherence to HIV treatment because they lack the necessary access to healthcare and wider support. Inaccessible healthcare will therefore make it impossible to reach the target for HIV epidemic control. 

Consideration of disability is therefore critically important for HIV epidemic control, and specifically, the ability to reach 90-90-90 targets by 2030. HIV policies and programmes must increase their focus on disability and ensure that their programmes are inclusive of and accessible to people with disabilities. They must also strengthen links with rehabilitation services, so that people living with HIV-related disabilities can experience the best possible quality of life, and to thrive as well as survive. Better data and human-centred design of services are critical to inform these improvements.  

In our work on the Missing Billion initiative we have highlighted this issue and its importance to HIV control. The Missing Billion initiative is focused on strengthening health systems so they work for everyone, including for people with disabilities. One of our work pillars is to work with global health funders to help them review and adjust their investments and programs. Specifically, on HIV, the Missing Billion initiative is working on a toolkit for HIV donors and implementers, and we invite all interested stakeholders to engage with us on this. 

Today, on World AIDS day and in the week where we will also have the International Day of Persons with Disabilities (December 3), we urge HIV programmes to consider this issue, urge you all to become informed, engage with relevant partners, and start to make the change towards fully disability-inclusive HIV programmes.

References

Knowing the Unkown by Jill Hanass-Hancock, South African Medical Research Council

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AVERT. People with disabilities, HIV and AIDS, 2017.

WHO. World Report on Disability. Geneva: World Health Organisation; 2011.

Bright T, Kuper H. A Systematic Review of Access to General Healthcare Services for People with Disabilities in Low and Middle Income Countries. Int J Environ Res Public Health 2018; 15(9).

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Devendra A, Makawa A, Kazembe PN, Calles NR, Kuper H. HIV and childhood disability: a case-controlled study at a paediatric antiretroviral therapy centre in Lilongwe, Malawi. PLoS One 2013; 8(12): e84024.

Rukuni R, McHugh G, Majonga E, et al. Disability, social functioning and school inclusion among older children and adolescents living with HIV in Zimbabwe. Trop Med Int Health 2018; 23(2): 149-55.

Myezwa H, Hanass-Hancock J, Ajidahun AT, Carpenter B. Disability and health outcomes - from a cohort of people on long-term anti-retroviral therapy. SAHARA J : journal of Social Aspects of HIV/AIDS Research Alliance 2018; 15(1): 50-9.

Marsh K, Eaton JW, Mahy M, et al. Global, regional and country-level 90-90-90 estimates for 2018: assessing progress towards the 2020 target. Aids 2019; 33 Suppl 3: S213-s26.