Unpacking health care and disability–understanding the Affordable Care Act and German Choc’s medical needs

The  23rd Conference of ASPE–the national organization with an exclusive focus on integrated employment for people with disabilities– coincided with the Supreme Court issuing its decision on the Affordable Care Act. Throughout Thursday June 28th, the Breakfast Buffet, Breakout Sessions, Awards Luncheon, and Exhibition Hall were abuzz with the question, how will the Supreme Court’s ruling affect Americans with disabilities?

Now that a few days have passed and the dust has settled, I would love to break it down for you here. It may sound strange, but my dream job involves translating convoluted policy  so that it is easily understandable to the people it affects the most.  In this post, I will discuss how three aspects of the Affordable Care Act –(1) the Individual Mandate, (2) Medicaid Expansion, and (3) Pre-existing Conditions–affect people with disabilities. Dorothy Parker once said, “brevity is the soul of wit,” and it is in her spirit that I will give a brief description of just these three elements and their impact on Americans with disabilities.

1. The Individual Mandate: all Americans are required to get Health Insurance by 2014, or they must pay a penalty. The Individual Mandate will provide coverage for Americans with disabilities who might have applied for one health care program, but are waiting for their health benefits from another program. For example, people with disabilities who receive Supplemental Security Disability Income (SSDI) must wait 24 months to become eligible for Medicare. Without the individual mandate, these individuals would likely lose their health insurance while waiting to become Medicare eligible, and experience difficulties getting new insurance because of their pre-existing conditions.

2. Medicaid Expansion:  states can choose to increase eligibility and coverage requirements for Medicaid, which is a federal and state funded program that awards health care to people with low-incomes and disabilities. For the states that expand Medicaid, Americans with disabilities that could not afford insurance under the individual mandate, would now be able to get insurance.

3. Pre-existing Conditions: people with disabilities who were denied coverage because of having a pre-existing condition such as their disability, will now be able to get health care. The Center for Disability Rights, Inc. notes, “more than 17 million children with pre-existing conditions will no longer be at risk of being denied coverage. In 2014, that protection will extend to anyone of any age with a pre-existing condition.”

As my brain wraps itself around these three updates, which foretell great news for the approximately 50 million (one in five) Americans with disabilities, I want to explore the health care story of the individual at the center of my blog–German Choc.  Yesterday when I was doing research for this post, I discovered a blog written by a man named Ben Sampson, who works in Guatemala as a Program Coordinator for Operation Groundswell. Ben met German Choc in November, 2011, and describes how a private security Guard hired by the Guatemalan Nickel Company shot German in 2009, in what was intended to be a fatal shot.

Incredibly, German survived, but the bullet wound severed German’s spinal cord, paralyzing him from the waist down. Ben states: “Subsequently placed in Guatemala’s underfunded public health system, Germán developed an ulcer and again would have almost certainly died,” but Transitions Foundation of Guatemala, a nonprofit organization dedicated to providing rehabilitation, education, and employment services to people with disabilities (described in my post on disability in the US and Guatemala), provided German with crucial care. German went on to spend the next 18 months in hospitals and rehabilitation centers in both Guatemala and El Salvador. He returned to his home in El Estor to encounter another loss–his wife had left him and their baby son. Now, German lives with his parents, the three of them caring for his son together.

German’s journey contrasted with the Affordable Care Act’s effects on American’s with disabilities, seems especially sad, but German is not tragic, the strength of his survival is extraordinary. Contrasting the two is my meditation on how groundbreaking news in American intersects with one man’s story in Guatemala.

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