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An Extension of My Body: Creating Equitable Pathways to Obtain Medical Equipment

 

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Millions of Americans with disabilities, like myself, depend on durable medical equipment as an extension of their bodies. I was evaluated for my first custom wheelchair at five years old. During that appointment, I eagerly waited to pick out a color for the chair while my dad learned about the process of getting the chair covered through insurance. At the time, I was naive about the entire process. I now understand that obtaining medical equipment through insurance is complex and far from equitable. 

Efforts should be made to improve access to care and streamline this process to ensure that people have what they need to live independent and productive lives. For many people, having medical equipment covered by insurance is the only way they can afford it. Custom wheelchairs, like the one I use, can cost tens of thousands of dollars. However, many factors beyond a person’s control can influence whether equipment gets covered. For example, some providers have more experience treating people with certain medical conditions, often resulting in difficulties in providing the extensive medical documentation and justification letters required by insurance. Additionally, my experience in obtaining a wheelchair can take up to 18 months and require several appointments. For each of these appointments, my family and I have to arrange our own transportation to ensure we get there on time. Across the entire medical community, it is important to consider a patient’s needs outside of treating their condition. 

I’d like to pose a question: do patients without disabilities have to provide medical documentation to prove that they are sick before being seen in the emergency room? 

In the vast majority of cases, I would say no. It deeply bothers me that insurance companies require so much from people with disabilities just to obtain necessities, such as equipment. A less extensive process would help alleviate the barriers that I and people with disabilities at large face. My parents have made many sacrifices so that I can access care and obtain medical equipment, including missing work without pay. I am fortunate to have had their guidance in navigating the complexities of insurance. Everyone’s reality is different, and obstacles persist.

I call on the NYS Assembly to support people with disabilities and chronic medical conditions by expanding health care coverage, improving access to care, and advocating for efficient insurance processes. Bill A04738A establishes a comprehensive system for New Yorkers to access health care coverage. Beyond this, there should be an expansion of transportation and translation programs that ultimately facilitate access to care. 

Jessica Huang is an undergraduate psychology student, and passionate disability advocate, who strives to foster open dialogue and create tangible change toward a more accessible world.