ICS’ Marcus Johnson Presents at SUNY Upstate Health Justice Conference

Independence Care System (ICS) Health Home Advocacy Specialist Marcus Johnson was a special guest presenter at SUNY Upstate Medical University’s annual Health Justice Conference.

The Health Justice Conference — a student-run event — focuses on ways in which students and healthcare professionals can serve as social advocates to work toward reducing health disparities and challenges to accessible, adequate healthcare. The goal is to promote advocacy to ensure for better health outcomes and health equity for disadvantaged populations, including people with disabilities. 

A discussion on advocacy and accessibility  

Before his individual presentation, Marcus participated in a panel discussion, “Disability and Accessibility In Healthcare,” along with guest panelists SUNY Upstate Professor of Pediatrics, Medical Director of Spina Bifida Clinic Dr. Nienke Dosa and SUNY Upstate Assistant Professor of Physical Therapy Dr. Erin Wentz.

The panelists discussed the importance of advocacy, the ways people can advocate, and how the incorporation of disability competent curriculum in medical schools can prepare students to provide proper, quality care for people with disabilities when they become doctors.

“The patient is an expert in their care,” Marcus said, noting that the specific health needs of people with disabilities, including his own, can be ignored by physicians. “I’m not being considered in my own medical decision. That needs to change. If you’re in the health profession and see that inclusion is not present, you need to advocate for change in the system.”

The complexity of healthcare

Following the panel, Marcus transitioned to his individual presentation, “Shared Advocacy: The Care is Not Complex, The System is.” The presentation focused on health disparities among people with disabilities, the complexity of the U.S. healthcare system, including challenges and biases people with disabilities face when seeking quality care, and his years of work as a disability rights advocate.  

Marcus — a former Juilliard School dancer known by many in his community who was injured in a car accident at the age of 20 — discussed his lived experience as a man with a spinal cord injury, and his advocacy experience. Advocacy, Marcus said, ensures that people with disabilities are heard, and is an opportunity to educate and influence legislators, policy makers, consumers and others on the services, supports and equipment they need to live in their community.  

Marcus discussed that adults with disabilities in New York are more likely to experience health disparities, and more likely to face other health issues, from depression to obesity. They are also impacted by bias, especially concerning equitable medical care, and often deal with physicians who seek to discharge them quickly, are uncertain on what type of care to provide, and raise concerns about the expense of accommodations. 

Advocacy in action  

Marcus discussed his advocacy through The Civics League for Disability Rights (CLDR), an independent, volunteer-led group of New Yorkers with disabilities. He explained the league educates the community on issues that impact their lives, assists individuals in becoming effective advocates and works to secure important services and supports for people with disabilities through policy change.

“Our members had issues accessing A+D Ointment—members with bladder issues couldn’t void or pee on their own without having more catheters to use,” Marcus explained. “Our advocacy led to meetings with the New York State Department of Health (DOH), where we were able to work to ensure members could obtain A+D Ointment.”

Taking action

Marcus called on attendees to get involved with advocacy groups to highlight the challenges and barriers people with disabilities face and to call for equity in healthcare. 

“People with disabilities are here to stay—and we need the healthcare world to have a greater knowledge of our community,” Marcus said. “Healthcare needs to be person centered, accessible and equitable. Through advocacy, we can effect change in policy that support people with disabilities to not just live, but thrive, in the community.”

Click here to view Marcus’ presentation.
Click here to learn about the CLDR.

Christopher Engelhardt

Christopher Engelhardt

Communications Specialist

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