I was recently listening to the Podcast “This American Life” and was struck by the very question that I keep asking of advocates with regards to intellectual disabilities. We are told over and over again that “evidence shows” yet have these advocates really looked at the evidence or are they just taking on faith what they have heard and have believed it?
Questions asked are “how do we know it’s true?”, “what is the proof of it?” “how much have you accepted without evidence?”
“Sometimes there’s a thing that you think you know, even though, right in front of you, staring you in the face, is clear evidence to the contrary.” There are also the issues of denial and deceit at play when censorship of opinions and experiences are practiced.
The most recent issue with lack of evidence is in the recommendation of the Seattle Commission for People with Disabilities (PwD Commission) to immediately eliminate the special certificates for employees with disabilities who would earn a sub-minimum wage. Supposedly, the commission did 4 months of “intensive research” but they have not been able to provide any documentation of their research other than opinion pieces, articles that actually oppose rapid elimination of the certificates or outdated research. (Below this post are links to the documents the PwD Commission provided as their research into the issues of sub-minimum wage). They have not been able to address the issues I have asked with regards to how this recommendation will affect other aspects of the people’s lives. Apparently, from the answer I received, the other aspects are irrelevant in this decision.
I wrote a letter to the Office of Labor Standards with my concerns about the recommendation and then again about the lack of evidence that was provided by the PwD Commission in making this recommendation ( letter to Ms. Bull in Office of Labor Standards regarding sub-minimum wage August 2017, non-evidence letter to K. Bull of OLS – November 2017)
One position paper submitted by APSE was used as evidence. It is very interesting that in reading this position paper and looking up the citations, the so-called evidence is not there. They seem totally unaware of the significant limitations written by the author (Cimera) and only use part of the conclusion as the evidence. (APSE is the Association of People Supporting Employment First – Subminimum Wage Research Documents from PwD Commission)
Need to keep the findings in context:
- Did employee begin work immediately upon enrollment (tends to occur in sheltered workshops) or was there a long process to being employed (more likely in community employment)?
- The number of hours worked in each setting is unknown. Sheltered workshop employees by be “on the job” of physically present for 40 hours a week, there may be hours of down time when the employee is not actually working. Also, by definition, sheltered workshops are continually staffed (this also helps with supports during “down time”)
- Community supported employees may not need (or may need) job coaches on site with them and therefore the costs are not influenced as much by the hours worked. Not knowing how many hours were worked and what percentage of those hours was staffed by a job coach, Given the number of hours worked by the employees and the amount of job support needed is unknown there is no possible way to make a comparison of the cumulative cost to that of a sheltered workshop.
- There is the issue of “skimming” – that is that even though the participants in this study were classified as having the same level of disability (“most significant”) there is no assurance that the level of limitations was identical.
- “Given that it is impossible to quantify every variable that could affect cost-effectiveness, let alone find sets of supported and sheltered employees who have identical abilities, every study that attempts to compared sheltered and supported employees might be comparing apples and oranges” (Cimera, 2007)
My opinion is that both options are needed to best serve our population of people with disabilities and more specifically people with profound disabilities including intellectual disabilities. There are pros and cons to each scenario and it needs to be individualized to the person as to which would be the best option. This is what PERSON CENTERED PLANNING is about.
This is an issue that is happening all across the nation but there is no actual evidence or reliable research which supports the policies that are making sweeping changes to people’s lives. When reviewing studies, reports and research, it is extremely important to consider the limitations in that study, the demographics and regional differences and the types of jobs that people are employed in.
Yes, there may be problems with the oversight and management of employment (as can be read about in this article – Segregated and exploited article) under the special certificates but that means we need to correct those problems so the system works as intended. It does not mean to suddenly change to a different type of program or system that has not been documented to provide any better outcomes for a specific population. Again, this is where is it critically important to read through the studies and understand the limitations. The conclusions mean nothing without understanding the limitations.
My questions to the Seattle Commission for People with Disabilities regarding the recommendation to make a rapid elimination of the special certificates and the answer I received, indicate to me that this commission does not understand the full impact this recommendation will make in the lives.
My hope is that this commission does invite and pay attention to people with intellectual disabilities and their support circles. It is critical to involve the people who will be affected by the change. Remember “Nothing About Us, Without Us”