Recently, I was invited to participate in “Forging a Path Toward Integrated Care for Dually Eligible Individuals,” a national conference hosted by the University of Pennsylvania’s Leonard Davis Institute of Health Economics, to address healthcare barriers that people with physical disabilities face.
The room was filled with researchers, health plan executives, policy wonks, leaders of State Medicaid plans, and only a few people like me—people with physical disabilities and users of the plans designed by the folks in attendance. Was I nervous? Yes! Did I doubt I needed to be there? Absolutely not.
The truth is, many of these people had years of training and education and were some of the most sophisticated thinkers in America about integrating care for people who are dually eligible for Medicaid and Medicare. But none of them had lived even one day as a wheelchair user. They had not encountered the barriers that I have, and did not regularly hear from people living with disabilities about, for example, their challenges getting a wheelchair or securing the number of catheters that allowed them to empty their bladders an appropriate number of times a day. Some in the audience were actually surprised that I was still having trouble finding an accessible primary care provider in New York City. In their minds, the Americans with Disabilities Act had addressed that, and accessibility was a done deal.
People who are dually eligible are a small population with poor health outcomes that use a disproportionate amount of public healthcare dollars. As such, healthcare experts are always looking for ways to improve the health of this population, to make the systems simpler to navigate and more cost-effective. But they will never be successful in this endeavor without consulting the people most impacted by the plan—the consumers.
As a consumer, I shared my recent experience of visiting a new primary care provider with this group of health care experts. The provider came highly recommended for their office’s accessibility and disability competence. I highlighted encountering my first barrier a mere three feet from the front door when the receptionist told me to check in on the computer at the kiosk. Because I am a quadriplegic, this was an impossible task. Luckily, I had brought a friend with me to the appointment, but the experience underscores how cost-effective solutions for the provider cause me major challenges. Obviously, this barrier could be easily addressed by a well-trained, disability competent staff member, but that requires everyone to acknowledge that my needs are different, and that money and time must be spent to teach staff how to accommodate me.
I know there are many people with disabilities who feel it is not their job to continually educate people that should know better. I also know many members of our community are tired and frustrated that our needs are continually overlooked. I get it. As a co-leader of the Civics League for Disability Rights, a consumer-led group of advocates working to improve accessibility in health care and other key areas of life, I advocate for the changes we need to live better lives. I channel my anger, frustration, and exhaustion into making the system better.
Attending this conference gave me hope that there were people out there thinking creatively to address the concerns of all the players in this system: the states, the providers, the health plans, and the consumers. There were mentions of a dizzying amount of ideas, including plan designs, payment models, and data on what worked and hadn’t worked in the past. Providing cost-effective care in an accessible setting that results in better health outcomes for people with disabilities is a complex issue in need of the very best problem solvers. But no calculator, plan matrix, payment methodology, or quality score can tell the story of the lives of people with disabilities. We need to be at the table. We need to be invited and included in the conversation.
As the conference keynote speaker, Toyin Ajayi, MD, MPhil, CEO of Cityblock, said, the work of serving dually eligible individuals is both “hard work and heart work.” I believe these leaders care and want their efforts to pay off in meeting their goals of cost-effective improved health outcomes. I acknowledge their expertise and years of hard work. And as an advocate for my community, I demand they recognize mine as well. I encourage you to accept the invitations you get to share your lived experience. When we are invited and heard, a difference.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.