Reimagining Health Systems That Expect, Accept and Connect 1 Billion People with Disabilities

Abstract

In September 2022, the Missing Billion Initiative (MBI) published a new report on disability and health, co-authored with the Clinton Health Access Initiative. The report highlights evidence that people with disabilities are being excluded in health, leading to a staggering 10 to 20-year life expectancy gap. It then presents a new vision of inclusive health informed by the perspectives of people with disabilities and a roadmap for global health stakeholders to achieve this vision and work towards universal health coverage. The report is signed and championed through an Advisory Panel which includes representatives from UK and German governments, the UN, philanthropy and disability advocates.

Introduction

In 2019, the first Missing Billion report showed a clear problem: 1 billion people with disabilities are missing from health systems and denied their right to healthcare globally. Health outcomes for people with disabilities are worse in all areas of Sustainable Development Goal 3. After 2 years of advocacy to put this crucial issue on the table for global health actors, the Missing Billion Initiative took a step towards providing a solution. We partnered with the Clinton Health Access Initiative to write a new report which refined the evidence on health outcomes for people with disabilities, created a vision for inclusive health systems, and provided a roadmap for health system leaders. This report is a concise and actionable document meant for global health stakeholders – governments, donors, NGOs - who want to tackle the "Missing Billion issue". We worked with an Advisory Group of 10 global health leaders to guide the work and ensure its quality and relevance to the sector. The project was funded by the Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ) on behalf of the German Federal Ministry for Economic Cooperation and Development, with further contributions from the UK’s Foreign, Commonwealth & Development Office.

Who should benefit?

There are more than 1 billion people living with disabilities worldwide: 15% of the world's population. People with disabilities include those with long-term physical, mental, intellectual, developmental, or sensory impairments. These impairments — in interaction with various barriers — may stop people from participating equally in society. People with disabilities are not a homogenous group, but the health system failures and breakdowns in health service delivery are driven by similar issues. On average, people with disabilities are more vulnerable to poor health because of their higher levels of poverty and exclusion and through secondary conditions and co-morbidities. People with disabilities therefore require higher levels of prevention, diagnosis, and treatment services. 

Despite a greater need, health services are often lower quality, unaffordable, and inaccessible for people with disabilities. These barriers are even more significant for women. People with disabilities sometimes need specialized medical care related to the underlying health condition or impairment (e.g. physiotherapy, hearing aids) but they also need general healthcare services like anyone else (e.g. vaccinations, antenatal care). While the unavailability of specialized services or the poor quality of general health services is a global issue, people with disabilities are disproportionately affected in low- and middle-income countries. 

The Missing Billion report shows these health disparities lead to an overall life-expectancy gap of 10-20 years. This insight builds on a systematic review of all available country-level data and modelling. The report further analyzed a data set of over 3 million people to establish key specific health coverage and outcomes differences: lower rates of childhood vaccinations, lower cancer screening rates, 2-3 times higher rate of HIV/AIDs, and 2-3 times higher rates of diabetes. The Missing Billion report provides new evidence on the "health gap" for people with disabilities, gives a vision for inclusive health systems, and suggests key actions for global health stakeholders to improve access to health for people with disabilities that leave no-one behind. The report is agenda-setting for global health leaders and will be used to trigger commitments towards the Global Disability Summit in 2025. These people are an entirely underrecognized group in global health; no major policy document or movement mentions people with disabilities. The Missing Billion Initiative was started to change that.

Engagement

To develop a vision for disability-inclusive health systems, we used a human-centered design approach. We engaged with more than 400 people with disabilities and their families or caregivers from different geographic regions, ages, genders, impairment types, and health seeking needs. We worked with people with physical, sensory, intellectual, and neurological impairments to understand their needs, desires, and expectations for an inclusive health system. The engagement included conversations with people with intellectual disabilities and their caregivers during a Special Olympics Health Camp in Mumbai; interviews with participants from Africa, North and South Americas, and Asia about their experience in healthcare settings, compared these to other settings and used creative techniques to imagine an ideal health journey; 2 workshops (in-person in Mumbai, and online with participants from various countries across Asia, Africa, and Europe) to identify pain points in healthcare experiences and suggest pain relievers to arrive at optimal healthcare journeys; and further engagements through crowdsourcing on social media to validate the findings of the previous research activities.

Through this research, people with disabilities expressed a reimagined vision for healthcare as one where they are 1) Expected: Services are provided in settings that suit people with disabilities, and facility-based care is accessible and affordable. Participants can access health services in ways convenient to them. 2) Accepted: People with disabilities are welcomed and provided with quality care by trained and motivated staff regarding disability. Having facilities and staff prepared for people with disabilities helps to reduce access and communication barriers and respect patients’ dignity and privacy. Participants drew parallels from analogous positive examples such as airports who have trained staff, wheelchairs on hand, and printed language on the ticket stating the accessibility needs of the person with disabilities. 3) Connected: Referrals and accessible follow-up care are given after healthcare visits with connection and co-ordination across the entire healthcare journey. In their communities, people with disabilities want accessible health information for identifying symptoms, reliable transportation to reach the healthcare venue, clear instructions for after-care, and connections to other services and people with similar conditions. The report was presented to stakeholders in Berlin, Nairobi, and London, during which people with disabilities shared their perspectives. Several participants of the research are featured in a short film and podcast episode created to support the dissemination of the report.

Research 

As part of the Missing Billion Initiative team and the Advisory Panel, people with disabilities helped design the report from the outset. We engaged 400 people with disabilities using a human-centered design approach to shape the vision for inclusive health. Their input is the basis for the roadmap to addressing the Missing Billion issue by 2030. In addition to the human-centered design, new data analysis on disability and health was conducted for the project. We analyzed UNICEF’s Multiple Indicator Cluster Survey 6, one of the largest global health data sets that discerns health outcomes by disability, and conducted 3 new systematic reviews on COVID-19 mortality, overall mortality, and non-communicable diseases. Our team also used the results from the systematic review of increased mortality associated with disability to model the life expectancy reductions using a Life Table Approach, showing a shocking gap of 10 to 20 years of lower life expectancy for people with disabilities. Our analysis of the UNICEF MICS data resulted in key health outcomes data for 37 countries in the following areas of health: child development and nutrition, childhood illness, sexual and reproductive health, HIV, malaria, and health insurance coverage. To make this analysis accessible to the lay audience, we have created an online data dashboard which aggregates all the analyses findings and compares data for up to 3 countries. 

People with disabilities are not currently a recognized population group in global policy priorities for health. Too often people assume people with disabilities are a minority and the overall health system needs to be fixed first. With this report, the Missing Billion Initiative challenges and corrects that perception. There are 1 billion people with disabilities: they are not a minority, and they have healthcare needs like anyone else. Designing health services that are inclusive and ensure quality care for people with disabilities cannot be an afterthought. None of the global health goals will be achieved otherwise, and designing health services with a universal design approach will make them better for everyone - not only people with disabilities.