Reimagining Inclusive Healthcare for Persons with Disabilities

There are 1 billion people worldwide with disabilities. That’s 15% of the world’s population. They often experience greater access barriers to health services, which contributes to poorer health outcomes. Health systems failures at all levels drive this situation. Through this discovery project, we leveraged participatory and envisioning approaches used in human-centered design and futures to reimagine health systems to be inclusive of persons with disabilities.

We conducted in-depth design research interviews with persons with disabilities representing a range of geographies, ages, types of disabilities and types of health services sought, supporting them to define a vision for what inclusive health systems should look like. The interviews helped us uncover barriers and problems that were heightened or unique to persons with disabilities while seeking healthcare across their journey from perceiving a health need to actually receiving treatment and follow-up care and understand what represents an ideal inclusive health system to them. We then translated these insights into a vision for inclusive health systems, including ideal health journeys and practical recommendations for changing health systems towards such a vision, which was tested & iterated with persons with disabilities across two participatory workshops and expert interviews.

There are multiple barriers that people with different types of impairment may experience when accessing health services. These seemingly small barriers may become drop off points for a person with disability. Thus, they can prevent or delay healthcare access, and lead to worse health outcomes and potentially reduced life expectancy.

Upon identifying these barriers, we translated them into requirements for an inclusive health system by reimagining each step in the healthcare journey for the user who finds that step most challenging, to ensure that healthcare remains uninterrupted for all.

When digging into each step of the user’s journey, we realised how the existing defaults do not respond to the needs of people with diverse abilities. This creates gaps throughout the user journey, both inside and outside health settings. People with disabilities and their caregivers are often forced to rely on assistance, techniques and equipment that isn’t adapted to their abilities. This also leads to lack of expectations from health services until they see proof of the service being relevant to them.

Therefore, some of the health outcomes derived focus on setting defaults that are inclusive of persons with disabilities.

Here’s one example:

Provide default health assessment techniques for diverse abilities

"He gets irritable and throws a tantrum when he is not feeling well. He can't directly communicate the problem or where the pain is. It’s up to us to understand. Sometimes, he cries for hours and we are unable to figure out what to do.” - Guardian of a child with ID

Self-report is the default first-line health assessment technique, unsuitable for many. Persons with disabilities often experience pain or discomfort but find it difficult to communicate the presence, location or intensity of the same. This pain of discomfort goes unassesed or undetected. Caregivers of persons with intellectual disabilities live in the stress of their inability to detect or manage the pain. They struggle with getting the person to self-report pain in spite of their compromised ability to do the same.

Bring the health service closer to the user + Reduce steps in reaching health service

“When my husband was sick we did zoom appointments, they helped because we didn't have to go out and spend that additional time and effort planning and fretting. I have called her 2-3 times, and it has saved me a couple of visits.”- Old Adult with Mobility Disability

Reaching the health facility can be a major barrier for many people with disabilities. Transportation barriers lead to people delaying or missing appointments even when care is available. Public transport is often inaccessible and private transportation unaffordable for many persons with mobility disabilities. This friction of accessing transportation often becomes the tiny step that prevents people from achieving their desired health behavior.

Provide equipment and care that is adapted to the individual, as a default

“In the radiology department, they have those adjustable tables because they are expecting people like me. But in the examination room, they don't have those tables.”-Young person with SCI

In health settings, persons with disabilities are often forced to take assistance from people to use equipments that aren’t adapted to them. A lot of patients with mobility disabilities aren’t able to access generalised services like dental care and regular examination because the equipments aren’t accessible. Since adaptation is not the default, it alienates persons with disabilities from accessing mainstream services and they often have to look for a specialised service that is designed for them.

Eliminate negative consequences of complaining or expressing discomfort

“PwD are often scared to make complaints because of reprisals. There needs to be a complaint mechanism that feels safe.”- Adult with Cerebral Palsy

Persons with disabilities are often scared to make complaints and raise grievances about the health workers. They continue to endure discomfort at health services without fuss to avoid risking the service they receive, fearing retribution and negative consequences on their health and safety if the health worker decides to penalise them for the complaint.