Why is healthcare leaving people with disabilities behind?

Dr Tracey Smythe
LSHTM’s Tracey Smythe discusses why embracing inclusivity isn't just a call for change; it's a collective responsibility to ensure comprehensive health for all, leaving no one behind
"In confronting the stark reality of higher mortality rates among people with disabilities, it’s evident that inclusive actions are not just an option but a necessity." Tracey Smythe, Associate Professor, LSHTM

The 1.3 billion people with disabilities around the world face increased risk factors associated with poorer overall health, such as poverty, issues in older age, malnutrition and exposure to violence. While disability is diverse, people with disabilities often report experiencing similar barriers when seeking healthcare support.

Reports continue to highlight that health services are failing to accommodate people with disabilities. Barriers include: inadequate knowledge from the healthcare provider about the patient’s disability, limited physical accessibility (such as a lack of ramps for wheelchair users) and limited accessible communication (such as easy read formats for patients with cognitive impairment). Barriers like stigma, negative attitudes and misconceptions about disability can also lead to exclusion from some general health services, for example sexual and reproductive care.

These barriers compound marginalisation of people with disabilities and amplify the impact of underlying health conditions and impairments on mortality rates. In our recent article published in The Lancet Global Health, we found that in low- and middle-income countries (LMICs), people with disabilities had a mortality rate twice that of people without disabilities.

This issue also extends beyond LMICs. In the UK, the Confidential Inquiry into premature deaths of people with intellectual disabilities found that 37% of the deaths reported were "avoidable deaths" due to factors relating to the quality of healthcare received. This is in contrast to 13% in the general population. In the USA, studies have shown that adults with any disability face a higher likelihood of mortality and in Scotland, research has shown that children with intellectual disabilities exhibit elevated all-cause mortality rates compared to their peers.

The COVID-19 pandemic also underscored this health inequity and our research estimated a 2.7-times higher COVID-19-related mortality rate for people with disabilities compared to those without. We found that the rate for those with intellectual impairments was even higher.

While our recent findings show higher mortality rates for people with disabilities in LMIC remain regardless of impairment types or age, this was particularly stark for people living with neurological conditions and children with disabilities. Neurological conditions, for example dementia, can affect critical processes such as respiratory and cardiovascular functions that may worsen with time. Children with cerebral palsy, for instance, are at extremely high risk of early death due to respiratory infections, malnutrition, and comorbid brain disorders such as epilepsy. Nevertheless, these patients, who need and should be receiving a high level of support, still face general health system barriers.

Our evidence points to a systemic failure to accommodate people with disabilities within existing health systems. To achieve comprehensive health for all, we must actively challenge stereotypes and create health systems to include people with disabilities.

One example of the many projects working to enact positive change in this area is the Missing Billion Initiative (MBI). The initiative aims to improve health access and outcomes for people with disabilities worldwide through developing tools, solutions and collecting data. MBI’s reports highlight that people with disabilities are being excluded in health, present a clear pathway for action towards defined disability-inclusive health systems, and emphasise that addressing the lack of disability data is the crucial first step for health systems and policy makers to reduce care inequities for people with disabilities.

In confronting the stark reality of higher mortality rates among people with disabilities, it’s evident that inclusive actions are not just an option but a necessity. We need to work together to dismantle barriers and foster a health system that truly accommodates everyone.

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