America's health care system neglects people who require long-term care and denies them the opportunity to lead full, rewarding lives.
Since the moment my brother was rendered a quadriplegic in a diving accident when we were teenagers, I have maintained a constant, silent stress in my body. I am worried about health complications inherent in a paralysis injury, terrified for what happens when my parents are no longer able to serve as Jeff’s primary caregivers.
My brother is, aside from requiring constant care for his injury, in good health. My parents have done an exceptional job of keeping his life, unlike his cervical vertebrae, stable.
We are, in many ways, lucky.
The same cannot be said for a group of men my father’s age in Atalissa, Iowa.
In a groundbreaking feature released last weekend, The New York Times profiled a group of Iowan men with intellectual disabilities who were forced to perform backbreaking hard labor for more than 30 years, housed in filth by "caregivers" who did nothing of the kind. These men, who worked in a slaughterhouse for hours on end, with no treatment or support for their disabilities, lived in a schoolhouse so squalid they had to cover their dinner plates to protect them from cockroaches. Many still have chronic health issues resulting from such neglect.
Wrote Times reporter Dan Barry, “Every morning before dawn, they were sent to eviscerate turkeys at a processing plant, in return for food, lodging, the occasional diversion and $65 a month. For more than 30 years. Their supervisors never received specialized training; never tapped into Iowa’s social service system; never gave the men the choices in life granted by decades of advancement in disability civil rights. Increasingly neglected and abused, the men remained in heartland servitude for most of their adult lives.”
Since they were discovered in 2009, advocates and social workers have worked to give these men a sense of freedom seemingly granted to everyone but individuals with disabilities. These men each lost over 30 years of their lives because Iowa failed to protect them from their designated protectors. Families were told Henry’s Turkey Service was the best option for their sons and brothers. Instead, these men were as much prisoners as the turkeys they were told to tear apart.
Reports of barbaric conditions surfaced every few years; no action was taken.
A few men tried to escape; one, Alford Busby Jr., ran away during a 1987 snowstorm: “Local officials searched the wintry landscape without success. Three months later, during the spring thaw, a farmer found a body along a field’s fence row, a quarter-mile from the main road. Mr. Busby was 37, or maybe 43. 'Mentally retarded man wandered away from home in subzero temperature,' his death certificate says, citing hypothermia.”
The men were rescued five years ago. They now receive Social Security and Medicaid, they have homes to live in and care for them, and they are paid wages for jobs worked. They have the freedom to meet new people, date, and live a life they’ve chosen.
The Times piece exposed my greatest fear: what will happen when my parents are no longer able to provide for Jeff, when my brother will have to join the ranks of thousands of Americans who require 24/7 care and lodging somewhere separate from their chosen home.
My father spent the summer as an embedded journalist in Baghdad a few years ago, and because my mother couldn’t work her full time job and also fill the holes in nursing care normally covered by my dad, my brother was forced to stay temporarily in a nursing home. I would travel from Manhattan to see him in Rhode Island, and attempt to hide my tears until after I’d left. A nurse came over at the end of one such visit, and in what she intended to be a moment of trust between us, gave Jeff a kiss on the cheek. I wanted to tackle her to the ground, furious that this stranger was playing at false intimacy with a young man she knew nothing about.
Instead, I choked back tears and left my twentysomething brother in his room, a bright young man relegated to living in a home with elderly residents in a system that treats them all as if they're just waiting to die.
President Obama proposed the Community Living Assistance Services and Supports (CLASS) program as part of the Affordable Care Act, which offered voluntary long-term care insurance. But that support (granted to eligible workers after five years, not taking into account exceptions for those whose disabilities preclude employment) capped out at a lifetime cash benefit of $75 a day/$27,000 per year. According to the National Spinal Cord Injury Statistical Center, the average yearly expenses for someone with a high-level spinal cord injury run an average of $181,328, not including indirect costs.
The CLASS Act has since been repealed and replaced with a long-term care commission; there is no word on what recommendations will come, nor when.
The Christopher & Dana Reeve Paralysis Act, passed in 2009, aimed to further scientific research and improve “quality of life” and rehabilitation options for individuals living with paralysis. But there has not yet been comprehensive legislation to protect Americans with chronic spinal cord injuries as their caregiving options change over time. There is no mechanism to support independent living for someone with a high-level injury, and no understanding that an otherwise healthy, capable person should not be relegated to the same care granted to the elderly.
Curt Decker of the National Disability Rights Network said the Iowa story “is what happens when we don’t pay attention.” I read about the men of Atalissa and I mourn for the years lost, taken away from these sons and brothers.
And I wonder who will care for mine.