A megaphone

By the numbers: the fight for health equity for people with disabilities

A lack of accurate, consistent healthcare data is a barrier to care for people with disabilities. Here's what Perkins is doing to help.

“People with disabilities have a right to add years to their lives and life to their years through better health.”

McKinsey Health Institute report, “The missing billion: Lack of disability data impedes healthcare equity”

In a recent report from the McKinsey Health Institute and The Missing Billion initiative, it was revealed that there are “sizable and persistent gaps in health data with respect to people with disabilities.”

And – given that an estimated 16% of the global population (1.3 billion people!) live with a disability that affects visual, auditory, mobility and/or neurocognitive experiences – this is cause for alarm.

But why is this happening? How is this happening?

One of the challenges is that there isn’t a consistent, universally adopted definition of disability – and certainly not one that takes into account the nuances and intersectionalities that would make a definition especially useful.

There also isn’t a consistent, universally adopted way to capture this disability-related information.

Some countries don’t collect disability data at all. And in countries that do, the information is often captured simply as part of a check box: “Do you have a disability? Check yes or no.”

Imagine the lived experience, potential need for accommodations and the realities of the individual person behind each “yes” being batched into one large group. Again, there’s no accounting for nuance or intersectionality – and that’s dangerous.

Without proper data, healthcare providers have insufficient information about their patients – which can lead to breakdowns in communication and, ultimately, care.

In fact, according to the report, a 2019-20 survey of 714 practicing U.S. physicians indicated that only about two in five were very confident in their ability to provide equal-quality care to patients with disabilities, and only three in five strongly agreed that they welcome disabled patients into their practices.

This isn’t equitable or ethical. We can do better – because people with disabilities deserve better.

How do we fix this?

The good news is that awareness is building – and we’re not alone in our concern.

Organizations like McKinsey and the Missing Billion initiative are working to address these massive gaps in data.

But we can’t – and won’t – wait.

As Helen Keller said, “I am trying to make [the world] a little more as I want it.”

At Perkins, we’re doing groundbreaking work to ensure that our community is represented. That people with disabilities are acknowledged and understood. That our voices are heard. And that every person counts.

The data that the world’s made available to us isn’t yet perfect – we know that. But we’re prepared to build off of what’s there and to keep building, to break down the barriers to equity for people with disabilities. Here are just a few of the initiatives that we’re prioritizing:

a head with a circle highlighting their brain

Conducting unprecedented research and data analysis on CVI

Despite being the leading cause of childhood blindness and low vision, Cortical / Cerebral Visual Impairment isn’t widely recognized, diagnosed or understood – by educators, the medical community or even many vision professionals.

Using health insurance data and advanced analytics, our CVI Center recently conducted an assessment focused on children and young adults with CVI in the U.S., drawing upon analysis from McKinsey & Company. And for every diagnosed patient, we found four more likely cases of CVI – which is exactly why accurate data matters.

Icons of three people in bubbles with lines connecting them in a network

Creating a community committed to building a more accessible world

At the Howe Innovation Center, we have begun convening and connecting an exciting community of forward-thinkers who are uniquely equipped to create the next generation of accessibility solutions that people with disabilities truly want and need.

DisabilityTech is a large and growing market – it’s expected to reach $40 billion by 2030. And it’s estimated that people with disabilities and their allies control more than $13 trillion in annual disposable income. People with disabilities are worth investing in – and the Howe Innovation Center is building connections to make that happen.

Taking our knowledge, expertise and energy – and sharing it around the world

Perkins works with families, teachers, schools, doctors, hospitals, community leaders, universities and governments around the world to make education accessible to all children, wherever they are and whatever their ability.

Together with local collaborators, we are planning to expand the current deep impact we’ve made in a few sites to a national-level transformation in 18 countries by 2030. Our goal is to rebuild a world that includes the 240 million children with disabilities, everywhere, from the start. We believe every child can learn, and we can show you how.

When it comes down to it, we’re simply advocating for things that are human rights – healthcare, accessibility, education. But impactful change is best made together. Will you join us?

About the author

Leah Barrett Demers is the Senior Digital Marketing Manager at Perkins where she’s worked since 2016 to grow, amplify and accelerate programs that serve and empower people with disabilities and their allies – including BlindNewWorld, the Howe Innovation Center, Perkins Access and College Success.


Transition Talks workshop #2: Student-Centered IEPs: A Pathway to Stronger Transition Outcomes


Transition Talks workshop #1: Transition planning overview and series kick-off

A stick figure celebrating an event with their arms in the air, throwing confetti

Accessible events: A guide