How Healthcare Can Better Engage the Disabled Community

In my last newsletter, we overviewed the Biden Admin’s Global Health Security Strategy and the importance of developing global infrastructure to identify, track and improve the care we’re providing.???

Part of developing the infrastructure necessary to respond to health crises comes from being cognizant of the needs (and often the disparities) across different communities and populations, particularly those that historically have been underrepresented in healthcare. And as we think through developing a responsive infrastructure to meet the very distinct needs of the populations we serve, we need to factor in that two-thirds of adults who have a disability reported a high level of distress at least once during the pandemic, according to a 2022 Pew Research Center study.??

In this issue, we’ll focus on considerations for healthcare leaders in engaging the disabled community and other underrepresented populations ahead of Disability Pride Month in July as we work to develop a more equitable health care system.???

When we think about disability in and outside of healthcare, we usually think through a lens of making accommodations for patients and employees –?but we often don’t think about it outside of meeting a regulatory or compliance requirement.???

Disability impacts all of us in one way or another—whether it is ourselves, our peers, or our loved ones—with the most common types including walking difficulties, independent living and cognition.?1 in 4 in the U.S. have some sort of disability, and even that statistic differs greatly across populations. For example,?18% of American Indians and Alaska Natives report having a disability and are more likely than Americans of other racial and ethnic backgrounds to report having one.?

A lot has happened in terms of disability policy and legislation in the last century . Most notably:

• 1935: The Social Security Act was signed into law by President Roosevelt, creating an assistance program for those with disabilities.
• 1963: President Kennedy signed the Community Mental Health Act, aimed at improving mental healthcare and providing federal funding for mental health providers and research facilities.
• 1965: Title XIX (19) of the Social Security Act established the creation of Medicaid, which helps provide care and coverage for low-income families and those with disabilities.???
• 1973: The Rehabilitation Act makes it illegal for federal agencies or public institutions receiving federal funds to discriminate based on disability.??
• 1990: The Americans with Disabilities Act (ADA) is signed into law by President Bush, affording civil rights protections to individuals with disabilities.??

In a statement for last year’s Disability Pride Month, U.S. Department of Health and Human Services (HHS) Secretary Xavier Becerra reflected on the 33rd anniversary of the ADA : “Passing the ADA was a significant victory in the fight for disability rights. Unfortunately, far too many people with disabilities are still unable [to] get the services and supports they need to live in their communities… In his proclamation marking the ADA anniversary , President Biden calls for action to expand access to home and community-based services and accessible transportation, improve employment opportunities, protect voting rights, and more. We must challenge ourselves, and our nation, to accelerate our progress and make inclusion and equal opportunity for people with disabilities a reality.”??

More recently, a new set of rules from the HHS strengthens protections against disability discrimination under Section 504 of the Rehabilitation Act, which takes effect on July 8, 2024 and requires full compliance in 2026. These rules include the obligation to adopt the U.S. Access Board’s standards for accessible medical diagnostic equipment (e.g., exam tables, mammography machines) and adherence to accessibility standards for all web and mobile applications.??

In the data below from the CDC, you can see that despite the progress we’ve made, there is still a lot of work to be done (in and outside of the healthcare system) to ensure the disabled community feels safe and equipped to seek the care they need.??

So, what can those of us in healthcare do to ensure these needs are met???

Listen to (and encourage) feedback?

We must have ongoing dialogue and engagement with the disabled community directly to obtain and implement their feedback.??

In addition to community members, healthcare leaders can also tap into the expertise of their employee population to gain insight on how to better care for these populations. However, many employees often don’t feel comfortable sharing their perspectives or disclosing their disability due to stigma. To counteract this, leaders can acknowledge and celebrate Disability Pride Month and National Disability Employment Awareness Month (NDEAM), support their Employee Resource Groups (ERGs) and explicitly name disability as an equally valued form of their organization’s diversity.??

If you plan and design in partnership with disability, your result will be better. Look at what you are already doing and ask: “Is disability here? And if not, why not?”??

Model best practices from other industries and voices?

We should also look to and borrow from leaders in other industries on how they effectively think about and design for disabilities –?and apply those learnings to healthcare. We must push ourselves beyond thinking only through the lens of compliance and physical access. As we talk about things like the continued use of technology and digital assets to engage patients, how do we ensure they’re able to be used by a wide variety of individuals???

Think through the lens of the disability experience?

Leaders and institutions must move beyond personal assumptions and fully understand the current disparities faced by the populations they’re serving. This needs to occur across all spaces in health care, including non-patient facing work like data analysis and revenue cycle. I have to admit that I have not often discussed or thought about much of the work we do through the lens of disability across my career journey.??

Being aware of statistics and outcomes for the disability community, including those with disabilities having lower preventative treatment and cancer screening rates , is an example of thinking community-first and will allow for addressing the disparity with the specific needs of the disability community in mind. Shifting our mindsets in how we think about, look at, and discuss data to include the disabled community will help us make more informed decisions and help develop tailored interventions and strategies with the objective of improving equitable access and outcomes for all.?

Looking Ahead + Final Thoughts??

Meaningful action for this community goes deeper than checking a box –?it should come from an informed, empathetic place in partnership with the community itself and be at the center of every leader and organization’s thinking.???

I have the opportunity of seeing this framework put into practice at Providence , with focused work around disability led by Sarah Quinto, MA, CFRE and Angela Marith, MS . Providence recognizes disability as a form of diversity in our workforce, patient populations and communities, yet also acknowledges disability discrimination has been seeded within our nation’s health systems for many years. In aiming to better understand disability health equity issues and authentically partner with the disabled community, Providence is driving internal and external initiatives to strengthen healthcare for all:?

• The Providence Disability Caregiver Resource Group is an Employee Resource Group that builds belonging, advocates for the needs of its members, and educates caregivers about disability issues. Since its launch two years ago, it has grown to include caregivers in patient-facing and non-patient facing roles from many of the diverse communities Providence serves.??
• The Caring and Inclusive Language guide is a living document that has an extensive section on disability, including an overview of disability history and vocabulary and terminology to use when engaging the community.??
• One in Five is our upcoming podcast launching in July, amplifying stories and disparities experienced by the disability community outside of clinic walls. (Stay tuned –?I’ll cover the first episode on my LinkedIn! ??)??

I’ll leave you with a quote from Sarah, who serves as the Office of Philanthropy Senior Program Strategy Officer and Disability Caregiver Resource Group Co-Chair at Providence:??

I think that health care leaders think about disability in two ways. They believe that health care disparities are directly attributable to someone's disability, making it impossible to close the disparity gap. Or they believe that disability is too complicated, and they shut down. Both of these views are harmful and miss the third option, which is to partner directly with the disability community to understand and address disparities. It's the old "sunlight is the best disinfectant" analogy. The disability community knows what it needs, just ask us. We'll tell you. And I firmly believe that, given the size of our community, we'll help leaders make health care better on an exponential scale.?

Looking ahead to next month’s issue of Simplifying Healthcare, we’ll cover lessons learned from the pandemic and what healthcare leaders need to know around the early ending of the free COVID vaccine program for those who are uninsured.??

Until next month.???

- Ruth ????

Have an idea for a future topic or questions in the world of healthcare? I’d love to hear from you!?