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of their research other than  opinion pieces, articles that actually oppose rapid elimination of the certificates or outdated research.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

 

 

About us, Without us

 

This week I have had the opportunity to really see what trained self-advocates think of those who are not able to speak and share their own experiences or opinions.  I have been told over and over again by these trained self-advocates that as a parent/guardian, that my observations are self-serving and that “Nothing about us, without us”, the catch phase of self-advocates has nothing to do with guardians.

Sara Luterman for blog

 

Sara Luterman, editor of NOS Magazine, wrote “”Nothing about us without us” refers to disabled people. Since you are not disabled, it’s not about you.” Ms. Luterman sent me a link to an article she wrote in The Thinking Person’s Guide to Autism  and then added “You may find this helpful, particularly, ” Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy.”  Thank you, Ms. Luterman for letting me know what you think of people I know and love.

Comments from NOS editor Sara Luterman

Ms. Luterman makes many assumptions regarding the role of a guardian and clearly does not understand the legal and court appointed responsibility that a guardian has – that is to represent the person in their best interest.  If this role is denied, I’m curious how these trained self-advocates involve and understand those who are not able to voice their opinions to those who do not understand them.  While pushing their agenda forward without understanding or allowing those with guardians to share their perspective and needs they are practicing discrimination against those more vulnerable than the self-advocates who can read, write and speak themselves.

The censorship that is practiced by several groups of trained self-advocates makes it appear that there is unanimity in their advocacy for people with intellectual and developmental disabilities.  In fact, the opposite is true.  Even when people write “I am interested in others perspective on this, other than my own” the editor will not allow another perspective to be shared.

This is one reason that I write on this blog – to share other opinions and learn from others.  I have learned a great deal by the fact that I have been blocked from several sites that are run by trained self-advocates.  They have no intention of understanding the needs of others and are acting like selfish adolescents who are rebelling against their parents.   Will they continue on their developmental path to adulthood?

Comments to NOS Magazine regarding Mental Age Theory Sept 2017

 

NOS Magazine would not publish a comment responding to another parent asking for others perspective

About us, Without us

 

This week I have had the opportunity to really see what trained self-advocates think of those who are not able to speak and share their own experiences or opinions.  I have been told over and over again by these trained self-advocates that as a parent/guardian, that my observations are self-serving and that “Nothing about us, without us”, the catch phase of self-advocates has nothing to do with guardians.

Sara Luterman for blog

 

Sara Luterman, editor of NOS Magazine, wrote “”Nothing about us without us” refers to disabled people. Since you are not disabled, it’s not about you.” Ms. Luterman sent me a link to an article she wrote in The Thinking Person’s Guide to Autism  and then added “You may find this helpful, particularly, ” Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy.”  Thank you, Ms. Luterman for letting me know what you think of people I know and love.

Comments from NOS editor Sara Luterman

Ms. Luterman makes many assumptions regarding the role of a guardian and clearly does not understand the legal and court appointed responsibility that a guardian has – that is to represent the person in their best interest.  If this role is denied, I’m curious how these trained self-advocates involve and understand those who are not able to voice their opinions to those who do not understand them.  While pushing their agenda forward without understanding or allowing those with guardians to share their perspective and needs they are practicing discrimination against those more vulnerable than the self-advocates who can read, write and speak themselves.

The censorship that is practiced by several groups of trained self-advocates makes it appear that there is unanimity in their advocacy for people with intellectual and developmental disabilities.  In fact, the opposite is true.  Even when people write “I am interested in others perspective on this, other than my own” the editor will not allow another perspective to be shared.

This is one reason that I write on this blog – to share other opinions and learn from others.  I have learned a great deal by the fact that I have been blocked from several sites that are run by trained self-advocates.  They have no intention of understanding the needs of others and are acting like selfish adolescents who are rebelling against their parents.   Will they continue on their developmental path to adulthood?

Comments to NOS Magazine regarding Mental Age Theory Sept 2017

 

NOS Magazine would not publish a comment responding to another parent asking for others perspective

Prove Me Wrong

Being fairly new to advocacy work, I imagine that I started to ask questions that had not been asked by those who have been around for awhile.   There have been many assumptions that have been looked at as facts and from what I can tell NO ONE has questioned the Division of Developmental Disabilities  (DDD) and The Department of Social and Health Services (DSHS)  regarding the accuracy and completeness of the reports and data that they give for advocates and legislators to work with.

Given the data that has been available, (which as been incomplete and inaccurate when compared to original sources) many poor decisions have been made.  I really do not understand why an agency that is granted the responsiblity to protect our most vulnerable is utilizing inaccurate information which will be used for policies which would then cause harm to that very population.  Can someone explain this to me?

Also,  when I have contacted many of the advocacy groups about this I have only heard that they only take the information that is given to them and assume it is correct without checking into the actual data.  Why wouldn’t anyone question where the data came from?

Most recently I have applied to join the Community Advocacy Coalition,  (CAC) a coalition made up of organizations which advocate for our citizens with developmental disabilities.  Scott Livengood, chair of this coalition informed me the of the admission criteria:

1. Be a organization with a 501 c(3) status, a licensed business or a public organization, and

2.  Sign the Letter of Agreement and support the Core Values

The admission form and Core Value statement are all very good with the exception of the last paragraph.  I filled it all out and wrote to Mr. Livengood that I was an advocate for a continuum of care and that as a business owner and advocate I could not sign the agreement as it was but offered my edits to which I could fully agree.  He wrote that he would take it to the membership  to discuss and get back to me.

Today I heard that my membership was denied.  I’m not surprised because I am aware that the CAC really does not live up to it’s own core values and that a large percentage of the member “organizations” do not meet the criteria in #1 above.   In addition, from being able to attend one meeting and reading minutes from other meetings it is clear the motive of the CAC is to close congregate care facilities to promote profits to the vendors.

I had offered to make a presentation to CAC with information regarding the data which I have researched  would be fully prepared to defend the information.  They did not take me up on the offer.  From the denial of my admission and lack of interest in having a presentation regarding critical information which they are lacking, I have come to the conclusion that the purpose of the CAC is to consolidate and close congregate care, deny services to those who need the high support need services that would be available to them in a continuum of care model and to accept negligence and crisis as the standard of care for our citizens with intellectual disabilities.

This is totally unacceptable and particularly so when CAC states values such as:

“Nothing about us without us”

“Provides a platform for advocacy organizations to share information, educate one another on issues of mutual concern ”

“Our many voices join in unison for one common vision”

That is fine that they will not accept the letter of agreement with the edits which I provided but then to not even take me up on the offer to share information, educate the group on missing data and give them the chance to ask me questions and to hear the defense of the data is further denial of information to those who critically need it in order to make informed decisions.  These actions do not uphold their core values at all.

Again, I am not surprised by the denial of admission since it is the consistent with the censorship against the information which I try to share and the banning of comments and postings from me on any of the sites which are part of The Arc monopoly on DD advocacy.  It is due to this monopoly that more thorough and accurate data and information is not known since the monopoly will not allow it to be publicized and distributed.  This is a very sad state of affairs and one which only adds to the crisis that they supposedly state they are trying to correct.

Without accurate data the crisis will continue to escalate and those who support a continuum of care will continue to be the scapegoat for this while the vendors make profits = profits that could very well be used to provide more services and supports to those in critical need.