Note: A video of this press conference is linked here. Maria’s remarks begin at 21:40.
Thank you so much, Alison [Barkoff]. Thank you Secretary Becerra and Director Fontes-Rainer for your remarks today and for all of your work to make this rule happen.
I also want to thank General Counsel Stane Bagenstos and the many, many staff at HHS and other federal agencies who have made this rulemaking possible.
Today’s NPRM, in my opinion, represents the most significant update to the healthcare provisions of Section 504 in their almost 50 years of existence.
Going back to where you started, Mr. Secretary, think about how much healthcare has changed in the past 50 years. And yet, disabled people continue to confront the same outdated discrimination that we have had to fight against for decades.
I was born disabled. Some of my earliest memories are in doctor’s offices and clinics for therapies and treatments. And like so many disabled people, my initial experience of and understanding of my own body, my health, and my disability status was defined by medical professionals within the US healthcare system. Their assessments and perspectives on my competency and the value of my life impacted the quality of care and treatments that I received.
These clinician’s judgments significantly informed the expectations that others had of me, that then shaped my education, my employment, my ability to live in the community, and my ability to form a family.
As a child, I remember a physician refusing to help manage my post-surgical care because I was “too difficult of a patient.” This left my mother and I to manage the immediate days of my recovery on our own. As I aged, I was consistently confronted with inaccessible examination equipment that continues to prevent me from engaging in basic screening procedures like pap smears and mammograms.
And, as I became more deeply involved in the disability community and in disability advocacy, I came to realize that I wasn’t the problem. The problem was a healthcare system that doesn’t believe in the inherent value and quality of disabled people’s lives. I also came to realize that I wasn’t alone. I wasn’t the only person concerned about how these physical and attitudinal barriers and biases impacted the quality of life that I had, or my ability to address preventable health conditions.
In fact, recent research shows that more than 80% of U.S. physicians think that people with significant disabilities have worse quality of life than nondisabled people, and barely 40% of physicians felt confident about their ability to provide the same quality of care to patients with disabilities as their other patients.
We have that. It’s in the data. All of our experiences, the numbers show it.
The COVID-19 pandemic brought many of these issues to a head, creating a crisis for disabled people that continues to this day. In the early days of COVID-19, we saw state after state activate discriminatory crisis standards of care and medical rationing policies that stated that disabled people and older adults could be denied life-saving treatment, so that medical resources could be prioritized for others who were perceived to be less of a burden and supposedly had a greater chance of survival.
Now, while many people got a reprieve from the isolation of the pandemic by going outside and taking a walk, I did not. I didn’t because the presence of these discriminatory crisis standards of care made me deeply afraid. I was afraid that if I went outside for just a walk, I might fall and injure myself and require medical treatment. And then, I would go into a hospital where my care would be deprioritized. And if I got out, clinicians would determine that, despite living in the community my whole life, that I couldn’t possibly go back to my apartment, but would instead need to go to a nursing home where I was then far more likely to contract, and die of, COVID.
The chilling effect created by the rampant ableism in healthcare caused, and continues to cause, disabled people across the country to forgo their needed health management and prevention activities.
And of course, the disability community, all of us, fought back. We filed complaints and lawsuits. But systemic problems call for systemic solutions, so we also called for guidance, which eventually we got. And we called for an updating of the Section 504 regulations that would require our health and human services systems to adapt to and center the needs of disabled people. And that’s what this notice of proposed rulemaking does.
When it is finalized, it will not only improve quality of life for disabled people, it will be lifesaving. [APPLAUSE]
This rule will result in a health and human services system that works better for all Americans, and we look forward to its swift finalization and enforcement.
Thank you very much.