“Things I Mean to Know” (Sheltered Workshops and Supported Employment)

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of their research other than  opinion pieces, articles that actually oppose rapid elimination of the certificates or outdated research.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:

  1. 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)?
  2. 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”)
  3. 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.
  4. 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.
  5. 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 disabiltiies.  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 employement (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 critcally important to read through the studies and understand the limitations.  The conclusions mean nothing without understanding the limitations.

My questions to the Seattle Commssion 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” 

 

References:

Akkerman, A., Janssen, C. G., Kef, S., & Meininger, H. P. (2016). Job Satisfaction of People With Intellectual Disabilities in Integrated and Sheltered Employment: An Exploration of the Literature. Journal of Policy and Practice in Intellectual Disabilities, 13(3), 205-216. doi:10.1111/jppi.12168
Boyd, J. M., & Davis, C. (2016). When good is no longer good enough: Transitioning to greatness. Journal of Vocational Rehabilitation, 44(3), 279-285. doi:10.3233/jvr-160798
Cimera, R. E. (2007). The Cumulative Cost-Effectiveness of Supported and Sheltered Employees With Mental Retardation. Research and Practice for Persons with Severe Disabilities, 32(4), 247-252. doi:10.2511/rpsd.32.4.247
Cimera, R. E. (2010). Supported Employment’s Cost-Efficiency to Taxpayers: 2002 to 2007. Research and Practice for Persons with Severe Disabilities, 34(2), 13-20. doi:10.2511/rpsd.34.2.13
Cimera, R. E. (2016). A comparison of the cost-ineffectiveness of supported employment versus sheltered work services by state and demographics of program participants. Journal of Vocational Rehabilitation, 45(3), 281-294. doi:10.3233/jvr-160829
Cimera, R. E., Avellone, L., & Feldman-Sparber, C. (2015). An investigation of the outcomes achieved by individuals with intellectual disabilities and mental illnesses. Journal of Vocational Rehabilitation, 43(2), 129-135. doi:10.3233/jvr-150762
Cimera. (n.d.). The percentage of supported employees with significant disabilities who would earn more in sheltered workshops.

 

 

Guardians are not the “bad guys”

As a parent and guardian of my young adult son with complex developmental disabilities which include an intellectual disability, I am continually made aware of the “fact” from trained self-advocates that my opinion has nothing to do with what may be best for my son and that, as a guardian, I am only self-serving.  Also, since I do not have a developmental disability myself, I have no knowledge of what it is like to live with a developmental disability – more specifically an intellectual disability.

I fully support trained self-advocates in their mission to advocate for a meaningful life experience and to shape public policies to which affect the lives of people with developmental disabilities.  I do not believe that the trained self-advocates have a full understanding of the needs and supports that people with complex, profound or intellectual disabilities (IDD) would choose.  I also do not believe that these trained self-advocates understand the issues of needing a caregiver 24 hours a day to assist with ALL aspects of daily living and how the guardian is involved in helping a person to have a meaningful life experience.

The legal guardian has a court-ordered responsibility to speak on behalf of and in the best interest of the person for whom they represent.  The guardian, together with other caretakers, and the person needing the supports work as a team and the guardian can be the spokesperson for the person with IDD.

I understand there are many people with IDD who are able to speak up and advocate for themselves and ask for what they need and that’s great. Unfortunately, just by definition of this particular disability,  only the people with the characteristics of “mild” ID may be able to live independently with minimal support and/or intermittent support during times of uncertainty.

Unless trained self-advocates are providing the day in and day out, 24 hour care needed by the people who experience  the “moderate,” “severe,” or “profound” characteristics of IDD, they have no concept of the needs, supports and choices that these people would make and have no right to speak on their behalf.  Since by definition, this population is unable to advocate for their needs and supports, the guardians, caretakers, family members, community members, healthcare providers, and friends who know the person best are the the most appropriate advocates for this population.

Denying guardians participation in advocacy on behalf of the people they care for is an act of discrimination against this population.  The slogan “Nothing about us, Without us” includes the guardians when they are speaking in the best interest of the person who they have the legal responsibility to make decisions for.

The table below clearly differentiates the severity categories in the classification of those diagnosed with intellectual disability.

clinical characteristics of Intellectual Disabilities

This discrimination is practiced by many organizations and advocates who claim they are advocating for those with disabilities.  In the response I received from Alex Clardy, Legislative Assistant for Seattle City Councilmember District 1 Lisa Herbold, it is clear they do not understand how this population communicates and the discrimination practices greatly limit the ability of the policy makers to fully understand how these issues will affect the people who work these jobs.

“The PwD Commission received no comment opposing the elimination of the subminimum wage certificates. Some people contacted Councilmember Herbold’s office concerned that people need the subminimum wage to get jobs.  Yet, no people with disabilities contacted Councilmember Herbold’s office to say so.  Since the PwD Commission, through their individual lived experiences, can speak to these issues best, Councilmember Herbold asked that I share with you excerpts from the PwD Commission letter that outlines several specific points as evidence against these concerns specifically and opposing the subminimum wage as a policy. “

( I will comment on the so-called “evidence” which the Seattle Commission for People with Disabilities (PwD Commission) provided to the City Council in another blog post)

It needs to be noted that there are no representatives with IDD on the PwD Commission and they totally disregard the guardians and the collective experience of the guardians, caretakers, friends and community members of people with IDD.  The PwD Commission is exclusionary when it comes to people with IDD.

Another group – Self Advocates in Leadership has the following items in their 2018 legislative agenda:

Sail 2018 legislative agenda

Are they suggesting that supported decision making replace guardians?  Is this logical for the people who live with severe forms of IDD?

 

 

Seattle Commission issues apology

Update (October 12, 2017) 

I have been asked by some commissioners to file a formal complaint with the City of Seattle regarding the abusive nature of interactions between a particular member of the Seattle Commission for People with Disabilities and community members and organizations who had a concern. 

If you or others you know felt that a member of the Seattle Commission for People with Disabilities was abusive or inappropriately criticized you in their response to you, I have been asked to send a formal complaint to both the Commission and the Office of Civil Rights – Seattle Department of Civil Rights – complaints Thank you.

 

This past week a representative from the Seattle Commission for People with Disabilities sent an apology to me for being banned from their Facebook page by one of the page administrators.

According to the representative, the page administrator took things way too far.  Because of this incident, they have instituted a temporary social media policy and reassigned roles.  The Commission will be formally adopting a policy in October.  Until that time, you and another have been “unbanned.”

The commission will, however, be moderating the page tightly and will remove posts that become “inflamed” or that attack another.  You and Friends of Fircrest, were attached because of one person’s vociferous opinion about Fircrest and his mixing his personal opinion with that of the Commission (which has not yet taken a position.)

 

I appreciate the acknowledgment of the censorship and accept the apology.  I do hope to be able to attend upcoming meetings to provide another voice to the conversation.

We need to have these conversations to build a stronger community.

Elimination of Sub-minimum wage in Seattle

The Seattle Commission for People with disAbilities  has made a recommendation to the Seattle City Council to eliminate certificates which enable employers to pay people with specific disabilities a commensurate wage.  I know that there are discussions all across the country that are looking at issues of employment and wages for people with disabilities.

This is a quick update on this very heated discussion.  From what I can assume by the articles that I read and the correspondence I have had with at least two of the commissioners regarding this issue vie Facebook,  there has been little research or collaboration with those in our community who may be, now or in the future, affected by this proposal.

Attempts to offer insight, requests for research, transition plans and funding plans have been ignored and people who expressed concerns have been rudely and aggressively mistreated by at least one of the commissioners.

Seattle Commission for people with disabiltiies Shaun Bickley and Cindi Laws

Below is the first letter that I submitted on the Facebook page.  This led to the Facebook page administrator blocking me from further comments or reacting to any posts – and this post was removed.

I am the parent and guardian of a young adult with significant intellectual/developmental and mental health disabilities – all of a degenerative nature and I network with many other families, caregivers, guardians and people with IDD who totally disagree with the assumptions that you and others are making about those with disabilities.

Yes, the members of the commission may have disabilities but is the specific population of those with significant intellectual/developmental disabilities represented?  The population which identifies as disabled is extremely heterogeneous and we need to have choices available to ensure that all have a chance and opportunity to work. We are all very concerned regarding this issues. For many of these people who work under these certificates it’s not about making a living wage – it’s about having a job and being a member of the community, participating, sharing experiences and having daily goals and activities – basically adding meaning to their lives. 


Unfortunately, my son and others who experience some of the same types of issues he does, are not able to articulate their ideas, attend meetings, and speak in coherent sentences – even with the help of assistive technology, and so their voices are not heard. 


You do not speak for them – in fact, it is quite the opposite because you deny the people who know, love and understand them, the opportunity to provide their ideas and choices. These people are their friends, families, guardians, caregivers, coaches, case managers, co-workers. These are the people who are all better equipped to fill in and be a proxy for their voices. 


The fact that you make assumptions that you are speaking for all people with disabilities without taking into consideration those who are affected by this issue is an act of discrimination and devaluation of their personhood. 


We need these certificates to ensure choice – remember the saying “nothing about us, without us” – Please take it to heart!

Mr. Shaun Bickley, one of the commissioners, took offense with my letter, stating “”nothing about us, without us” refers to disabled people, not to parents, siblings, neighbors,  co-workers and other allies”.  He wrote that they (the commission) were all disabled and therefore can speak for all people with disabilities – whereas, guardians’ concerns are only self-serving.  He wrote that all people, even if they can just move one muscle, can make their choices known – regardless if others understand them or not.  (I am very confused by this since if others do not understand, how are their choices known?)

In looking at the members of the commission I noticed that several are lawyers, a few have PhDs and several others have a variety of advanced college degrees, one is a filmmaker and an artist,  one is a medical doctor  – I’m curious which one has an intellectual/developmental disability?  This is the question that got me blocked from the Facebook page as it was seen as using “degrading language and making people feel unsafe.”

More to come – letters have been sent to The Seattle Commission for People with Disabilities, the Mayor’s office, the Office of Labor Standards and to each member on the Seattle City Council.