A Response to ACCSES: We Believe NDRN is On the Mark Regarding the Need to End Segregation and Exploitation

Open Response Letter Regarding ACCSES Response to the National Disability Rights Network (NDRN) Report

Members of the Senate Committee on Health, Education, Labor and Pensions:

In an April 16, 2012 letter to the Senate Committee on Health, Education, Labor and Pensions, ACCSES CEO Terry Farmer writes "strong opposition to the recommendations made by the National Disability Rights Network (NDRN) in its report [Beyond Segregated and Exploited]." 

My colleague, Laura Owens, APSE president, and I support the NDRN Report and write now to explain why the ACCSES letter in fact demonstrates why the segregation and high unemployment rate of people with disabilities has continued so long.

The NDRN Report cites the highly unnecessary segregated nature of employment services received by people with disabilities, commonly called sheltered work. The report recommends ending such services, along with the obsolete practice of paying individuals sub-minimum wage, which in some cases have been literally pennies per hour. (For example, a Wisconsin survey found workers earning as low as two cents per hour.) The NDRN Report asks for greater promotion of integrated employment and increased labor protections for workers with disabilities. We support these recommendations fully, and we are deeply disappointed that ACCSES would abandon such principles.

Clearly the ACCSES letter illustrates a disturbing gap between what most disability service providers do and providing people with disabilities what they actually want and need, not to mention contemporary research. In January, 2012, a class action lawsuit was filed challenging Oregon’s failure to provide supported employment services to more than 2,300 of its residents who are segregated in sheltered workshops. One of the plaintiffs, Paula Lane, earned about 40 cents per hour. Yet, Lane has repeatedly asked for a real community job at competitive wage. A 2007 study supports the idea that people with disabilities prefer real jobs. Researchers surveyed adults with intellectual disabilities in sheltered workshops, their respective families or caregivers, and staff members in these workshops. They found large majorities of all of these groups, including staff, felt individuals working in sheltered workshops would prefer employment in the community and could perform outside workshops if support was made available.

Despite the fact that the large majority of disability funding goes to segregated services, research has shown no support for the efficacy of those services. One 2012 study showed that individuals who participated in sheltered workshops earned significantly less, and cost nearly two and half times more per person to serve, than their non-sheltered workshop peers. A similar 2011 study found, "...while what individuals learned in sheltered workshops didn't improve their employability, it did appear to make them more costly to train."

So, what is the response by the organization said to represent the provider agencies who continue to provide 1960-based services in the face of conflicting evidence? It seems to be to put its collective head in the sand. Rather than acknowledge the problem and talk about ways to manage the phase-out of segregation, and means to promote evidence-based practices, they have chosen to complain that exposing shortcomings is troublesome, saying "Pitting people with disabilities against their disability service providers is a divide and conquer strategy that distorts the widely shared goal of employment for people with disabilities."

Divide and conquer? Workers with disabilities are already impoverished with the lowest employment rate and income of any minority group in this country. What's left to conquer? Right now most disability agencies are spending money on programs that do not produce needed outcomes. The ACCSES letter states the NDRN recommendations would "curtail, restrict, and deny employment options, choices, and opportunities." Remarkably, the evidence shows that this is exactly what the current system has been doing for the last 30 years. Rather than continue the failed policies of the past, let’s commit to the innovative ideas proposed in the NDRN recommendations.

Dale DiLeo, Advocate, Past-President, APSE

Laura A. Owens, Ph.D., Executive Director, APSE

The Top 5 Reasons Why We Haven't Yet Ended Disability Segregation

1. Fear of Change

There is a big, obsolete, but functioning service structure out there, with people in jobs, agencies owning buildings, policies about how to get in and out of them, and billions of dollars to make it work. It's a giant game of mousetrap, easily able to fail when one part breaks, but there it is. Start changing pieces and the whole structure might come down.

Then, on a smaller scale, are families and the lives of their sons and daughters. Moving away from a workshop, an institution, or even a group home, into a life in the community, can be daunting. The only way to manage this fear is to support, shape, and give things time. People often use the fear of change to defeat things by playing the "they will have nothing then" card. But change shouldn't close existing systems overnight. It should be planful and make sense over time.

2. The Tendency to Overcomplicate

As far as I can tell, this habit seems to correlate with how many letters come after your name, as in degrees, certifications, or title. We really don't need more studies, grant proposals, 5-year plans, or task forces. I know policy problems can be complex, but the process and answers are straightforward if we keep the goals clear. The answer is never a paper or a task force; those are just tools that on rare occasions can lead to answers, but generally just produce even more paper or meetings. What is needed is policy directives, a funding change, or a grass roots action that takes things where they need to go. People need good jobs; not programs, training centers, or social enterprises. People need real homes, not residential facilities. 

3. Lack of Leadership

It takes guts to change anything, especially if you are in charge of policy. Most leaders are cautious and politic. This is sensible, but not if it prevents doing what's right. 

4. Belief that Significant Disabilities are Best Fixed in Buildings

This is simply no longer true, if it ever was. Yet, people still justify sheltered workshops, institutions, day programs,and other facilities as necessary for those with "more severe" disabilities. Even though there is: no… evidence… to… support… facility… services.

5.??? I have about ten more… but, i am going to leave this one for you. Add your fifth obstacle, and any ideas you might have on how to overcome it, by leaving a comment here.