Remembering the 'Boys' in the Bunkhouse - Four Years Later
This past December, the Trump administration announced that they will be revoking 25 legal guidance documents that interpreted and explained a wide range of federal laws, including a guidance letter written in 2016, protecting the civil rights of people with developmental disabilities. The administration stated that these letters "improperly went beyond explaining existing laws, and instead essentially created new rules." We don’t know quite yet what impact this will have on our work in the state of Ohio to move more disability services toward integration, but it is assuring that the existing legal framework is not impacted by the letter's revocation. Certainly, it also doesn’t change what our mission is at Starfire. In any case, attention to this letter by the Trump administration took me back to this story published almost exactly 4 years ago by the NY Times:
The story exposed the abuses done to a group of a few dozen men who were employed at a Henry's Turkey Service, a turkey plant in Iowa, 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."
The story is horrifying to read. The "bunkhouse" where they lived conjures images of Willowbrook, though almost 50 years after Robert F. Kennedy described that institution as bordering on a “snakepit,” and as “less comfortable and cheerful than the cages in which we put animals in a zoo.”
One man with developmentally disabilities was forced to work while he received chemotherapy treatment, “I threw up at my house and I threw up at work,” the article quotes him saying. Another got handcuffed to his bed at night. Another died getting lost in a snowstorm, trying to escape the only home he had. The house was so cockroach-infested it made eating an indigestible task, "many men ate with one hand over their plates to block the roaches falling from the ceiling." They rose at 3 a.m. for work, enduring what most could not imagine for even a day, and for 3 decades of their life took home sub-minimum wages for their efforts.
I read the article while pregnant with my first daughter and the images were so graphic and heartbreaking that it took me weeks to finish the story. I found myself asking again and again....How could this have happened in 2014? Almost forty years after deinstitutionalization in our country?
... Iowa’s governor at the time, Chet Culver, acknowledged that “every level of government has failed these men since 1974.”
If there is to be any consolation, the horrors these men went through informed and strengthened the call for radical changes in the disability service system across the country. The story of these men from Atalissa was the spark that brought flame to a deeper issue: the ongoing segregation of people with developmental disabilities in the workplace, home, and in day programs. While abuses like these are an anomaly, the root cause - isolation and segregation from community - was still alive and well in our country.
The same year the story hit newsfeeds (one month later to be exact), the Obama administration expanded efforts to crack down on "unnecessary segregation in employment systems" for people with developmental disabilities. President Obama then took further action with an executive order to raise the minimum wage to $10.10 an hour for workers employed under certain federal contracts. The message was that people with disabilities rights are being violated, and that Congress and the nation must do more in accordance with the Americans with Disabilities Act (ADA) to support people with disabilities in the community, rather than in the forced segregation of institutions.
Soon states such as Ohio or most recently in Utah, became the subjects of class action lawsuits led by civil rights organizations. The lawsuits followed the guidelines set forth by the 1999 Supreme Court ruling Olmstead, or Olmstead v. LC. This civil rights decision was based on the ADA, and stated that people with disabilities have a qualified right to receive state funded supports and services in the community rather than institutions when the following three part test is met:
- the person's treatment professionals determine that community supports are appropriate;
- the person does not object to living in the community; and
- the provision of services in the community would be a reasonable accommodation when balanced with other similarly situated individuals with disabilities.
As Olmstead moved throughout the country in the form of lawsuits, a legal guidance document was written in October 2016 by the Obama administration. This is the aforementioned document that was rescinded during the announcement by Jeff Sessions.
Here's an excerpt:
A core purpose of the ADA is to “assure equality of opportunity, full participation, independent living, and economic self-sufficiency” for individuals with disabilities. The integration mandate of Title II of the ADA is intended to allow individuals with disabilities to live integrated lives like individuals without disabilities, including by working, earning a living, and paying taxes. The civil rights of persons with disabilities, including individuals with mental illness, intellectual or developmental disabilities, or physical disabilities, are violated by unnecessary segregation in a wide variety of settings, including in segregated employment, vocational, and day programs.
Of course, especially if you've been following our blog for years, it's true that Starfire’s shift came before any lawsuits or pressure from the state. We were fortunate to come to our own realizations. But while others saw our transition out of day program into an integrated model as too costly, time-consuming, and radical, this clear direction in the 2016 legal guidance document from the White House and the DOJ was a beacon of support for Starfire.
Perhaps the momentum toward integration has taken hold, and many programs, families, and people with disabilities are on their way out of the outdated models that segregate people in facility-based settings. Certainly, forty years after deinstitutionalization and the IDEA, almost thirty years after the ADA, and after far too many days of people's lives spent in isolation, people with disabilities deserve an all hands on deck approach to moving each person out of institutional living and into community life. We cannot forget.