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Luthfi Azizatunnisa in her wheelchair

Reimagining health systems for a billion people with disabilities

The new ‘Missing Billion’ report draws attention to the unmet health needs of people living with disabilities and draws up roadmap for action to ensure they are ‘expected, accepted and connected’.

With much publicity, the world’s population reached eight billion on 15th November 2022. What has been much less publicised is that at least a billion of these people live with disabilities – around 15% of the total global population – an enormous group. 

‘A motorbike accident 11 years ago left me paralysed, so I am a tetraplegic using manual wheelchair’, says Luthfi Azizatunnisa, a lecturer in public health and nursing in Indonesia, currently doing a doctorate on social protection for people with disability at the London School of Hygiene, and Tropical Medicine. In Indonesia, Luthfi says she faced financial, practical and physical challenges accessing healthcare services and the equipment she needed.

Stigma is still strong. The problem is that many people with disability are not seen. They are often unable or reluctant to go out to access health care services, and healthcare services do not come to them.

Luthfi Azizatunnisa

A revealing report – and a podcast

An important new report, ‘Reimagining Health Systems that expect, accept and connect one billion people with disabilities’, draws attention to the unmet health needs of people such as Luthfi living with disabilities. The report has been published by the Missing Billion Initiative, with funding from the Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ) on behalf of the German Federal Ministry for Economic Cooperation and Development via the Global Project on Inclusion of Persons with Disabilities and the Sector Project Global Health [with further contributions from the UK’s Foreign, Commonwealth & Development Office.] The latest edition of the Healthy DEvelopments podcasts summarises central findings of the report, giving voice to its authors and to some of the people living with disabilities who contributed to it:

Podcast

Reimagining health systems for a billion people with disabilities

People with disabilities face barriers to health care

The Missing Billion report documents the barriers that people living with disabilities face when trying to access health care. These may include negative attitudes and stigma, lack of affordable and accessible services, or logistical difficulties. People with disabilities may not be able to access the services when they need them, but even when they do receive health care, there’s evidence to show that they receive worse quality care, which therefore leads to worse outcomes.

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The report concludes that these barriers stem from deeper systemic issues in health services. There are insufficient policies or laws in place to protect the right to inclusive health care for people with disabilities, and where these do exist, they are often not implemented. Too often healthcare workers do not have the appropriate skills or knowledge to care for the needs of people with disabilities.  

The report’s three key messages

Professor Hannah Kuper
Professor Hannah Kuper

Professor Hannah Kuper of the London School of Hygiene and Tropical Medicine is one of the ‘Missing Billion’ authors. She says there are three key messages in the report:  The first is the shocking finding that people with disabilities have 10 to 20-year shorter life expectancy. Secondly, when asked people with disabilities said they wanted health systems that ‘expected, accepted and connected’ them – in others words, health systems that know that people with disabilities need care, are well equipped to be able to do that and to connect them to the holistic care that they may need. Finally, the report concludes that making those changes to cater for the rights and needs of people with disabilities will require not only good governance and finance, but a wholesale reimagining of existing health systems, both in high- and low-income countries.

Diverse disabilities call for diverse service options

Of course, the word disabilities covers a huge range of realities –physical and mental impairments, congenital conditions and disabilities that are the result of accidents or ill health, as well as different genders, different ages and people living in different parts of the world. Yet, according to Professor Kuper, these realities have something in common:

For example, a child with Downs syndrome in Brazil and an older adult with dementia or somebody with physical impairments will have different needs. However, according to our findings, the underlying difficulties in accessing health care seem to be consistent across different settings.

Professor Hannah Kuper

COVID highlighted discrimination and disparities 

Since the first Missing Billion report was published in 2019, the global pandemic has further highlighted these disparities and inequalities, says Hannah Kuper. 

Our systematic review showed that people with disabilities are about two and a half times more likely to die from COVID. And this became much bigger in certain groups of people – for example people with Downs Syndrome were maybe 20 – 25 times more likely to die from COVID.

Professor Hannah Kuper

In the UK people with disabilities make up 16% of the population, but accounted for 59% of COVID deaths. The pandemic also disrupted routine health care services for people with disabilities. ‘I think this really illustrated and crystallised the discrimination and disparities faced by people with disabilities,’ says Professor Kuper, who points out that 10% of people who were admitted to intensive care with COVID also had dementia. ‘What was the quality of the care for those people? Were they very distressed at what was happening or was someone able to explain to them what was happening before they were intubated? What about ethics? What about consent? COVID and disability raised all sorts of issues for us.’ 

There is insufficient online information for people with disabilities

Another issue was information, says Canadian health Researcher Sara Rotenberg, who was involved in a recent audit of accessibility of testing and vaccinations websites to see what was available online to people living with disabilities. ‘Theanswer was not much,’ she says. 

We’ve often labelled people as anti-vaxxers if they’re not vaccinated without recognising that perhaps there are a lot of other barriers that would prevent them from being vaccinated. For example, if there is no accessible information on websites about how to book an appointment or transport to get you there. People living with disabilities might need home vaccination, which often has a longer wait or is more complicated to access.

Sara Rotenberg

As it became increasingly clear that people with disabilities were disproportionately more affected by the virus and dying in greater numbers than people without disabilities, Indonesia did try to make its vaccination policy more inclusive, says Luthfi Azizatunnisa. There was a mass campaign to prioritise vaccinations for disabled people and their carers and provide accessible transport for them.  ‘The pandemic opened people’s eyes to give inclusive health care services for people with disability. It was a lesson learned for everyone.’

Indonesian COVID vaccination poster targeting people with disabilities
Indonesian COVID vaccination poster targeting people with disabilities

Better training for health workers could make a difference 

Sara Rotenberg speaks from experience – she has a complex learning disability which involves auditory processing issues – which proved even more difficult for her when health workers were wearing masks and PPE during COVID.  Despite the lessons of the pandemic, a lot more remains to be done she says. Her PhD research at Oxford University on how much training health workers receive about disability has revealed enormous gaps. 

There have been some recent studies in the US that have looked at health workers and their attitudes towards people with disabilities in their ability to treat people with disabilities and they’ve been shocking. Many health workers feel unprepared to treat them, and some, in fact, admitted that they don’t want to treat people with disabilities.

Sara Rotenberg

She believes the Missing Billion report will do a lot to combat what she calls ‘ableism’ in medicine, by showing that training health workers to understand how to engage with people with disabilities can make a huge difference. Currently, she says, such training is unsystematic and inadequate. It needs to be firmly embedded in training curricula for health care workers.

‘One of the biggest issues with treating people with disabilities is that health care workers see only the primary impairment. So if, for example, you are deaf woman going in for some reproductive health services,  health workers have trouble engaging with you because they’re not there to treat your health impairment – but they also don’t have the tools with which to treat you as they would any other patient. So I think integrating that in training will really help improve quality of care for people with disabilities.’  Whilst much of this training would need to be tailored to local needs, Sara believes there also need to be agreed global standards in order to best serve people with disabilities. 

Sara Rotenburg
Sara Rotenberg

A compendium of good practices shows (how) it can be done

In addition to highlighting the problems faced by many people with disabilities, the report focuses on practical solutions – moving from awareness to action. As a result, this second Missing Billion report also contains a good practice compendium, drawing on examples from, for example, South Africa and Ireland, which have high level disabled representation in their Ministries of Health, or the UK, where the evidence-based Learning Disability Register has been established to try to tackle inequalities. In India, advocacy has resulted in all 500 medical schools now having mandatory training about disability, and in Brazil, a disability accessibility audit of more than 30,000 primary health care facilities led to funding disbursements that are dependent on accessibility criteria. 

These examples of successful interventions in different countries are the great strength of the report, says Sara: ‘It is exceptionally practical. It talks about a road map with clear goals.’ Being able to show policy makers such examples of specific interventions that work is immensely useful for advocacy campaigns, she says. 

Who holds the key?

There’s obviously a triangular relationship between people with disabilities and their needs, the healthcare providers, and, of course, the government that has to somehow fund health services. So who does Professor Hannah Kuper think holds the key to better access to health care? The answer is all three, she says: The billion people living with disabilities are an enormous and potentially powerful advocacy group; Healthcare workers are also an essential part of the equation, since they deliver services; and governments need to allocate funding and implement good policies.  ‘But I do think it also requires systems-level changes,’ she says.  ‘The global health system is massive but it hasn’t had great awareness of disability just because it hasn’t been flagged to them before. So if they can get engaged and start investing, then for me that’s a great outcome.’ 

There would be tangible economic benefits from such investment too, she argues. Without access to good health facilities, people with disabilities also find it more difficult to go to school or have a job or engage in in society. Their health condition might also progress and become more expensive to treat. Above all, says Professor Kuper, ‘As the world starts to invest in strengthened health systems, knowing that an epidemic in one country is going to affect the rest of the world, there’s now an opportunity to build back more inclusive systems.’

Components of inclusive health services
Components of inclusive health services

Inclusion is essential for all of us

With increased risks posed by pandemics, climate change and the demands of ageing populations, it will be essential to ensure that health services are made more inclusive and accessible to the ‘Missing Billion’ people living with disabilities, says Sara Rotenberg.  ‘Fifteen percent of the population is already not a niche percent of the population. If, as the report says, we don’t expect, accept and connect people with disabilities we’re not going to have health systems that really serve the people who are most at risk of poor health. And if we don’t do that, we won’t reach the Sustainable Development Goals and I think the gaps will only widen unless we address this issue now.’

Ruth Evans,
November 2022 

© Riki Setiyawan
© Hannah Kuper
© Sara Rotenburg
© The Missing Billion Initiative and Clinton Health Access Initiative
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