I have been working with individuals with intellectual and developmental disabilities since the spring of 2010, when I traveled to Haiti to spend a week in a home for children and adults with disabilities. Many of these people had been abandoned by their families and rejected by society due to both the cultural stigma of disability and the economic impossibility of caring for someone with complex medical needs. 

While there, I met a young girl named Belinda, who was 6 years old. A history of malnutrition and neglect had stunted her growth so that I could hold her in my arms. She did not speak, but she smiled and laughed and loved everyone she met. 

A few months after I returned to the U.S. to finish my bachelor’s degree, I learned that Belinda had died in a hospital parking lot after having been turned away by doctors and nurses at four different medical centers. Because of her disability, she was not considered worthy of saving. In that system, her life was worth less than that of an able-bodied individual. 

Seven years later, I see our health care system moving toward that same frightening reality. Individuals with disabilities report poorer health overall, are more likely to utilize the emergency room, and are more likely to be hospitalized for manageable medical conditions. Low Medicaid reimbursement rates make it challenging to find doctors who will accept patients on public insurance and the fee-for-service model incentivizes quantity over quality of care. Patients with disabilities, especially those that make communication challenging, are frequently misdiagnosed and overmedicated in a system where doctors do not have the time to listen. 

Current proposals to block-grant Medicaid funding, restrict eligibility for public assistance, and eliminate guaranteed coverage for pre-existing conditions will destroy vital safety nets for vulnerable, marginalized populations, including individuals with disabilities and complex medical needs. Should these proposals become reality, they will put us on the road toward a system in which individuals with disabilities, like Belinda, are not worth treating.

Sarah Lineberry 

Oak Park 

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