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NDRN Report Shines Light on Exploitation of Disabled

By Janine Bertram Kemp

The National Disability Rights Network released a groundbreaking report in January that has evoked a volatile reaction in many quarters. The report, "Segregated and Exploited: The Failure of the Disability Service System to Provide Quality Work," is NDRN’s call to action.

The report documents abuses at Henry’s Turkey Farm in Atalissa, Iowa, in 2009 and 2010. Sixty men with disabilities, who worked alongside non-disabled workers, lived together in a roach-infested, abandoned school-turned-bunkhouse. Henry’s paid $600 per month for use of the tax-free bunkhouse and deducted $10,000 a week from the disabled men’s checks, according to a story in the Des Moines Register.

Each of the disabled workers averaged a net pay of 41 cents per hour, while co-workers without disabilities averaged $9 to $12 per hour. Because Henry’s Turkey Farm was also landlord and “caretaker” for the workers with disabilities, the farm received the men's Social Security checks and took deductions for such things as housing and transportation. As a result, the disabled workers took home about $65 per month.

According to the NDRN, exploitation and abuse of people with disabilities continues in the segregated settings of sheltered workshops and “training centers” throughout the nation.

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NDRN found "a total failure of the disability service system to provide quality work for people with disabilities.” The report includes the evolution of workshops and problems with segregated work, sheltered environments and subminimum wages. It highlights a massive breakdown between good federal and state policies and their implementation and oversight, and explains funding streams and extensive legislative and policy recommendations.

ADAPT organizer Bob Kafka said there is something fundamentally wrong with using Medicaid home and community-based services funds for sheltered workshops.

"If you think of these workshops as plantations, and the people in them as the slaves picking cotton, then the providers are the slave owners making a profit off our subminimum wage labor," he said. "Over time we have become a commodity in this medical-professional complex we call the developmental disability delivery system."

Kafka served on the board of the National Association of Protection and Advocacy Systems (now NDRN) and has a deep understanding of policy in the realms of physical and developmental disability.

“Follow the money,” Kafka said. “There is a lot of it. Making a profit is not a bad thing; however, we must assure that the end result of making this profit is community integration, not segregation."

Release of the report has raised a hue and cry from those representing service providers.

“We are getting pushback from provider groups like ARC (an organization that promotes and protects the human rights of people with intellectual and developmental disabilities), UCP (United Cerebral Palsy) and ACCSES, so support from NCIL (the National Council on Independent Living), individual CILs (centers for independent living), and the broader disability movement is welcome and appreciated,” said NDRN executive director Curt Decker.

ACCSES (formerly the American Congress of Community Supports and Employment Services), the lobbying arm for disability providers, wasted no time in attacking the NDRN report. The group issued an open letter to Sen. Tom Harkin, D-Iowa, defending subminimum wage and the use of training and home and community-based services (HCBS) monies to fund segregated sheltered workshops.

Bobbie Silverstein, ACCSES legislative counsel and a former Harkin aide and Americans with Disabilities Act proponent, signed the letter. It criticizes the report and NDRN for attacking colleagues in the disability community.

The Harkin letter states: “…throughout the report the authors use pejorative language to describe the motives and practices of community rehabilitation programs. Examples include 'people with disabilities are being ...financially exploited'; 'sheltered workshops are not what they promise to be, and sometimes serve as an unsettling example of how good intentions can lead to terrible outcomes'; 'unfortunately, sheltered workshops and the subminimum wage still exist today because of the self-interested employers...'; 'sheltered workshops have replaced institutions in many states as the new warehousing system.' We do not understand how condemning colleagues in the disability community furthers the best interests of people with the most significant disabilities.” (The full letter can be seen at www.accses.org.)

Decker has a different view.

Curt Decker formerly from the National Association of Protection and Advocacy Systems (now NDRN)

“Transition has become a funnel for sheltered workshop money,” he said. “We are working with Senator Harkin to add new language that will close the front door. We are also working with federal agencies to increase monitoring and enforcement efforts.”

Kafka agrees. “What is lost in the whole controversy about sheltered versus integrated employment is why employment or even prevocational funds are not appropriated through the cross-disability vocational rehabilitation/independent living (VR/IL) system instead of the Medicaid HCBS system," he said. "And why are they almost totally for people with the label of developmentally disabled?

"Why are we surprised that the provider network (of Medicaid HCBS for people with developmental disabilities), who are incentivized to provide a package of services, decides that sheltered employment (what some call "dayhab") fits better in their business plan to maximize revenue rather than promoting integrated employment?”

The NDRN report noted that for transition and justification of sheltered workshop placement, providers play fast and loose with such terms as "choice" and "pre-employment." They argue that people with disabilities have the right to choose workshops as pre-employment training.

"Segregated and Exploited" notes that often the full range of options available for youth transitioning from school to work is not explained to students and their families. Instead, counselors offer sheltered workshops as pre-employment training. The placement often continues indefinitely, and the person never leaves pre-employment for actual employment. The service provider keeps collecting federal dollars for perpetual pre-employment.

Michael Bailey, president-elect of NDRN, said he believes that the transition population of young people with disabilities will help force policy change.

“There is a whole new generation coming out of transition who have had the benefit of inclusive education. Their expectations are very high and cannot be met in a sheltered workshop situation. The very least and most immediate thing we require is a moratorium on young people coming out of transition and going into sheltered workshops. That needs to stop now.

“They still think they are complete human beings with a real future, and they expect employment and a real life. That is perhaps the unintended consequence of inclusive education. They won't put up with it.”

"Segregated and Exploited" also notes what it called "the tyranny of low expectations.” Counselors and other service providers view those with significant disabilities as too disabled to work at real jobs in an integrated setting and, thus, real work and supported employment options are not offered. Person-centered planning isn’t an alternative when providers stereotype their clients as unable to work, according to the report.

Marsha Katz has voiced concerns about so-called "choice" and “pre-employment.” She is project director at the University of Montana Rural Institute and was formerly employed for 20 years at the Association for Community Advocacy, an ARC in Ann Arbor, Mich.

"I come from the long-existing school of 'pre' means 'never,'" she said. "So the term 'prevocational' is pretty meaningless or, rather, it's like the term 'pregnant.' Either activities are vocational in nature or they are not. There are people, even some with disabilities, who defend the existence of workshops and day activity centers as a ‘choice’ that should be available to people with developmental disabilities. Their rhetoric sounds to me much like the rhetoric we have heard from the groups who advocate that institutions should be a choice for people with developmental disabilities. In my opinion, they should certainly not be a choice that gets funded by federal dollars.

“For far too long there has been widespread, unconscionable acceptance of using a different yardstick to measure the rights and options for and choices afforded to people with disabilities, especially those with intellectual, communication and other developmental disabilities. The NDRN report is affirming what many of us have been demonstrating and fighting about for many years ... real jobs and self-employment for real pay in the community ... one yardstick for all of us."

Self Advocates Becoming Empowered, a group run by and for people with significant disabilities, strongly backed the report. At SABE, many have disabilities similar to those mentioned in Henry's Turkey Farm.

“We have been prepared enough," said Betty Williams, SABE president. "Get us real jobs. Close sheltered workshops. The NDRN report explains the real problems with the sheltered workshop system.”

Prior to the ADA, disability groups had generally formed a united front. But the release of the NDRN report has highlighted divisions between people with disabilities and service providers and between the developmental disability and physical disability communities.

“If we truly believe all folks, regardless of their disability label, can benefit from prevocational, vocational and IL services -- which I do -- maybe we should advocate moving all that Medicaid money currently used for those services through the HCBS system into the cross-disability VR/IL system," said ADAPT leader Kafka. "Community integration as promoted in the ADA didn't envision labels. It outlined discrimination against all people with disabilities. Let us advocate for that principle rather than circling the wagon around the silos and labels that have set us apart in the service arena.”

Decker sees the controversy as an opportunity for CILs to support implementation of the NDRN report in their own communities.

“Go into these workshops, visit and work with self-advocates," he said. "Let people in the workshops know there are other choices. They can do something else.”

The NDRN has requested support from the broader disability community in hopes that, based on the sheltered workshop report, its disparate groups will further the interests of people with disabilities by championing policy changes that will lead to integrated employment at fair wages.

Katz, the former ARC employee, sees a path to unity among members of the disability community.

“I understand why providers would naturally try to protect their turf, which includes the jobs of the staff they employ," she said. "And I don't think that that turf-guarding has to be mutually exclusive with a commitment to assisting people with disabilities to achieve real work for real pay in the real community -- the same outcome we all desire for ourselves and those we love.”

Background of this story. Click here

Janine Bertram Kemp is a writer and disability rights advocate who lives in Zig Zag, Ore. She is currently working with Tom Olin on the Disability Rights Center Photo/Oral History Project.