Home > Uncategorized > Why the media won’t cover issues of concern to people with developmental disabilities

Why the media won’t cover issues of concern to people with developmental disabilities

Whether it’s due to “cancel culture” or a misguided ideology that the largely privatized system of care in society is functioning perfectly for people with intellectual and other developmental disabilities, the mainstream media these days just don’t seem interested in reporting about the system.

For a while now, we’ve been debating why it is so difficult to get media coverage in Massachusetts, in particular, of issues of concern to this group of people and their families and guardians.

A letter sent to the New York Times may provide one answer. In the August 20 letter, 75 organizations and leaders in the disability community critique that newspaper’s apparent lack of interest in covering “serious issues facing those with significant intellectual and developmental disabilities.”

The Times has apparently not yet published the letter, which is sponsored by the nonprofit National Council on Severe Autism (NCSA).

The letter points out that the Times, while recently honoring the 30th anniversary of the signing of the Americans with Disabilities Act (ADA), failed to include virtually any mention of persons with intellectual or other developmental disabilities. Yet the paper published over two dozen articles over the past few weeks about people with a wide range of other, non-cognitive disabilities.

As the NCSA’s letter to the Times notes, “the full story” in honoring the ADA would include those people with profound intellectual and developmental disabilities. But in doing so, the Times would have to acknowledge that this group of people do not have “the autonomous decision-making, independent living, and competitive, minimum-wage employment that are the cornerstones of the Disability Rights movement.”

The letter ties the Times’ disregard of the developmentally disabled to “cancel culture.” The letter states:

It is ironic that the Times has excluded the most disabled from its ADA coverage exactly as a debate about “cancel culture” has embroiled this newspaper and others. Severe intellectual and developmental disability should be a bipartisan issue — we, the undersigned, represent the broad range of the political spectrum. But because our stories don’t fit the progressive left’s disability narrative, they have been effectively cancelled — exactly by those who claim to care most about this vulnerable population.

We think the disregard of the developmentally disabled is evident in the mainstream media as a whole. The media buy into an ideology promoted by much of the disability advocacy community that no one, no matter how low their measured cognitive functioning may be, has limits on what they can achieve in the community system.

The problem is that this is an absurd position, and it leads to basic contradictions between the ideology and reality. People with intellectual disabilities do have limits on their ability to function in society. Rather than confront that contradiction, the media appear to have chosen to ignore people with cognitive disabilities altogether.

When we raise issues about the need for institutional care or sheltered workshops for those with intellectual disabilities, the media in Massachusetts don’t want to hear about it. It doesn’t fit the narrative that there is no one who is incapable of functioning perfectly in the community and working in mainstream jobs.

We recently reported that the Baker administration discussed reducing public reporting of data on testing of individuals and staff in DDS-funded group homes for COVID-19. Although we tried to bring our concerns over that issue to the attention of the mainstream media in Massachusetts, no media outlet has run any articles about it.

With only the occasional exception, the mainstream media in Massachusetts do no more than scattershot reporting even on the tragic and ongoing problem of abuse and neglect in the DDS system.

Community-first ideology pushed by successive administrations and corporate providers

Perhaps not coincidentally, the ideological position that the community system of care is working perfectly for everyone fits with a decades-long push by successive administrations in Massachusetts and corporate providers for more privatization of the DDS system. According to the ideology, clients in privatized, community-based residences are completely integrated with their communities and can reach their full potential there, unlimited by institutional constraints.

But while the community-based system has meant more state-funded contracts for providers and skyrocketing pay for its corporate executives, the system has largely failed to integrate its clients, and is beset by a bottom-line mentality that provides low pay, training, and supervision of direct-care staff.

Systematic reporting on inadequacies in care in the privatized system, or on a lack of adequate testing in that system for COVID-19, is not desired by corporate, state-funded providers.

Absurd position that autism is “perfect”

The letter to the Times pointedly criticizes an essay that the newspaper published in July that illustrates the ideology driving media coverage today. The essay by writer Madeleine Ryan, the mother of an autistic child, is titled “Dear Parents: Your Child with Autism is Perfect.”

In it, Ryan stated, “Your child might be verbal, nonverbal, aggressive, passive, introverted or extroverted. It doesn’t matter.” She added, “Your child is perfect. Be skeptical of what doctors, teachers, family members or friends say to the contrary.”

The letter to the Times includes a response to Ryan’s piece by Amy Lutz, founding board member of the NCSA and parent of a severely autistic son:

[Jonah] will never go to college, hold a job, see the world, or have a romantic relationship. He will always require round-the-clock supervision, because he has no safety awareness: he doesn’t look before crossing the street, despite years of instruction; and in one terrifying moment, he tried to jump off a cruise ship because he wanted to swim in the ocean… Jonah’s experience is just as important…and must not be elided from the narrative in favor of some kind of fantasy autism nirvana.

The letter further quotes Lee Elizabeth Wachtel, Medical Director of the Neurobehavioral Unit at the Kennedy Krieger Institute and an Associate Professor of Psychiatry at the Johns Hopkins School of Medicine:

When an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm, or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied.

Warning in the Olmstead decision

The letter to the Times notes a warning by Justice Anthony Kennedy in the Olmstead v. L.C. U.S. Supreme Court decision, which cleared the way for expanded privatization of care of the developmentally disabled. In a concurring opinion to the Olmstead decision, Kennedy wrote that:

It would be unreasonable, it would be a tragic event, then, were the (ADA) to be interpreted so that States had some incentive…to drive those in need of medical care and treatment out of appropriate (institutional) care and into settings with too little assistance and supervision.

Unfortunately, that is exactly what the ADA and the Olmstead decision itself have been interpreted by the media and many advocates as allowing.

Both the ADA and Olmstead are being used as covers for the real attitude toward the developmentally disabled on the part of the media and so many others in positions of power — they just don’t care.

  1. August 24, 2020 at 3:03 pm

    I disagree that this is the media’s fault. Our local media covers our local programs for people of all abilities regularly. I think it’s a systemic issue — people with ID are pretty much at the bottom of everyone’s consideration. We need to change our culture and our society. The media can help with that, but they can’t create the change.

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    • Anonymous
      August 24, 2020 at 5:38 pm

      Good luck with trying to change society. And no, the media isn’t going to help with that either, since they refuse to admit the problems.

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      • vedwight
        August 24, 2020 at 5:43 pm

        it’s not up to the media to “admit the problem”…And thank you for wishing me luck on trying to change the culture. I work hard at it every day

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      • August 24, 2020 at 5:51 pm

        Vedwight, it is the job of the media to cover issues of concern to people, particularly vulnerable and powerless people. If the media are writing off a particular group because their issues don’t fit the media’s narrative, then the media are the problem. Not too many years ago, the media did cover these issues. Their motto was comfort the afflicted and afflict the comfortable. Today, the media are almost entirely corporate-owned and run, and it is to their corporate owners that they feel accountable.

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    • Anonymous
      August 24, 2020 at 5:53 pm

      Disagree “ved,’ media won’t write about something they won’t admit even exists.

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    • itanzman
      August 25, 2020 at 1:55 pm

      History repeats itself. Here is a blog post I wrote about Bettelheim and the media: https://www.linkedin.com/pulse/can-we-trust-media-irene-tanzman/

      Like

      • August 25, 2020 at 6:30 pm

        History repeats itself until we make clear to the world in a UNITED VOICE that our children are different One of the chapters of the book could be Who are the disabled I have a simple chart that begins to show the complexity of the Who and it becomes even from that how one size does not fit all.

        WHO we are Observations on the Disabled Community by Thomas Spellman

        WHO makes up the Disabled Community in the United States of America? What is their common interest? Can there be interest that one group of disabled individuals have against another group of disabled individuals? While there are a multitude of named Disabilities the broad categories are Cognitively Disabled Individuals and Physically Disabled Individuals. There are other disabilities that may or may not impact these two broad groups and they are being Blind, being Deaf, being Non-verbal and Anti-social behavior.

        I only deal with the first two disabilities Cognitive and Physical.

        On the X Axis I have plotted Cognitive Ability. Those who are Cognitively Disabled (IQ below 70) and those who are not Cognitively Disabled. That is a simple graph and I will note that Rosa with an IQ of 47 is to the left of the vertical line making the separation of those who are Cognitively Disabled and those who are not Cognitively Disabled.

        In order to see the interaction between the Cognitively Disabled and the Physically Disabled I have drawn a horizontal line using the Y Axis. This line is drawn such that those below the line are considered Physically Disabled and those above the line are not Physically Disabled. We now see the graph is slightly more complex in that there are four distinct groupings of individuals.

        There is a large “Normal” group (upper right) and then there are three distinct groups that are broadly identified as Disabled. The people in these three groups are all covered by the American Disability Act. It should be clear that the needs of the individuals in the three groups are widely different. We have a group that is Cognitively Disabled but are not Physically Disabled. We also have a group that is Physically Disabled but they are not Cognitively Disabled and then there is the group that is both Cognitively and Physically Disabled that I have called Severely Disabled.
        .

        Let us look at each of the Disabled groups

        What is important here is that there are great differences between the three groups of Disabled Individuals who are all covered by the American Disability Act (ADA). While they ALL need help, the help they each need may be exclusive to that group. While the physically disabled group needs help working in the community where they can WORK for jobs that pay at least the minimum wage those with Cognitive Disabilities needs Section 14(c) of the Fair Labor of Act of 1938 so they can WORK doing jobs that are simpler and are NOT economically viable. Ie the value of the finished product is less than the legal minimum wage to be paid. They in essence WORK for a commiserate wage, a wage that is proportional to the economic value of their WORK. There are many, many, other difference but this difference is the basis of the LIE (that Rosa is being exploited) when in fact she is working under Federal Law that is now 81 years old and allows, today over 170,000 individuals to work. Over a million have benefited from this Law since it was signed into Law by Franklin Delano Roosevelt in 1938.

        It should be noted that there is a less definitive line that divides the Cognitively Disabled group between those who can WORK for the “Special Minimum Wage” as allowed by Law and those who cannot WORK.

        By Thomas Spellman 210 N 2nd Street Delavan WI 53115 414 403 1341

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  2. Leslie Lockhart
    August 24, 2020 at 5:18 pm

    Thank you so much for this excellent article.  We are very tired of being overlooked because we don’t fit the state narrative.  Leslie Lockhart

    Liked by 1 person

  3. Clare A Stone
    August 24, 2020 at 7:48 pm

    It is the truth certain people count and others do not.
    At least here in Massachusetts WBUR and WCVB did provide a bit of media coverage in regard to covid and State treatment of those in the care of DDS.
    Those of us in the know realize that lack of care/interest is really a significant loss to those individuals of that disposition.
    Maybe things will change soon as we all are in this crash course of becoming better people thanks to covid. Joint effort among those of us with this knowledge is needed to speak up on behalf of people dealing with delays to assure them their place in mainstream news.

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  4. itanzman
    August 24, 2020 at 8:40 pm

    I recently worked on helping a political candidate develop her disability platform. Another person on the committee was a young woman who was obtaining a master’s degree from Harvard’s School of Public Health. This young woman was a disability advocate and had previously held an influential advisory position in the federal government. She wasn’t a mean or unfeeling person, but her position was that she was more qualified to advise government on severe disability issues than I was. Why? Because she had a disability and I didn’t. She was dead set against the subminimum wage, but she had never seen a day hab or any program that would serve as an alternative to a sheltered workshop. She told me she saw terrible things in the sheltered workshop. I believe she did, but she didn’t know that what she was driving individuals towards was even worse. She equivocated her disability which was totally invisible to me to my son’s disability which is obvious, severe and effects every aspect of his life. I doubted if she ever spent five minutes with someone like my son. In past decades, people would have been embarrassed to equivocate whatever she had to someone with a severe or profound disability, but this has changed with the neurodiversity movement. It isn’t unusual for someone who has been normal and leads a perfectly normal life without limitations to declare themselves “autistic” and be appointed to government committees and advocacy organization boards. The media is reflecting these new attitudes. I have seen parents reach out for badly needed support on social media, only to be bullied by a neurodiversity advocate. This is the new Bettelheim. As you know, Bettelheim promoted the bogus theory that poor mothering is the cause of autism. He was later found to have been lying about his qualifications as an autism expert. The same is going on today. There are folks who claim they have a disability, but there is no verifiable evidence that says they do. Some of these folks do have a disability, but not a disability like the ones they claim to have a right to speak for.

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  5. August 25, 2020 at 6:47 am

    OK We either complain or we organize and bring lawsuits. I have tried to get folks to respond and for some reason SILENCE is the response. I have written David any number of times with one response. He edited and published “Gifts of the Sheltered Workshop” and as part of that suggested that others should write about the Gifts of Day Service and Gifts of CFR and the Gifts of …… but silence

    I did not have $50,000 to bring the suit against Disability Rights Wisconsin (DRW) and so with no help I filed a pro se case. It is a one legged case as it was never served on DRW and the Judge took it upon herself to explain why DRW was not discrimination against Rosa. Hummm as I say. To find out that the Judge who has a duty when responding to find always in Rosa’s interest did the opposite. On the appeal the 7th, it proceeded to make a claim that I as Rosa’s guardian had NO STANDING in the court. A totally critical issues if it stands because Rosa and all the other lose their RIGHT to stand before a Federal pro se and more importantly that we as guardians have NO STANDING to protect the RIGHTS of those we are Guardians for which is what the DRW folks in the world are doing are they not?

    How is it that Gay folks got the RIGHT to marry the loves of their lives. Yes as issues of RIGHTS and in court

    Our folks do not even know that we have RIGHTS One person wanted “Civil Rights” for her son and when I pointed out to her that he had them an agreement but silence.

    If we do not publish a comparable document to “Segregated and Exploited” (not comment on it what ACCESS did and that was fine as far as it went) we will always be discounted. I have an outline of some of the chapters and the History chapter starts with what happened to Deaf people in 1880 in Milan Italy. What happened there sure was going on before that but that could easily be our starting point The THEY claimed that sign language was monkey language and beneath the dignity of humans and that ONLY vocalization was to the norm for the Deaf Community. I am sure that if David and other writers (I am not one of them – I have ideas and analysis but zero writing) Amy Lutz being one could easily write our book and we have the means to support that as it would become “required” reading but all of us 300,000 individuals. If we do not know our history we will repeat our history and while those who went before us were silenced by society norms and so could not effectively speak out against how the disabled and elderly were being treated ie my own grandfather was beaten in the 1960’s at a “county home” and mother said I should not go to the funeral. We MUST speak or it will fall to those 2 generation to get back to where we are today. While the courts can be useful they also accepted as the Law of the Land “white only” and “black only” How was that acceptable for 100+ years??

    Who is willing to form the group that will work on the outline for OUR BOOK about our children our wards now that many of them are over 18 and are not our adult children.

    Waiting yet again

    Liked by 1 person

    • itanzman
      August 25, 2020 at 8:18 am

      I’m currently working on a book about the Bettelheim and the effect of his cruel theory on one fictional couple. It sounds like you have some good ideas, but there are some realities about authorship you might not be aware of. Those who self-publish rarely reach wide audiences. I have two self-published books which sold fewer than 300 copies each. It takes years to write a historical fiction. It took me three years to write my Bettelheim book if you count the research time. To publish mainstream, the book must be beyond perfect. Your pitch to literary agents must be phenomenal, and the first chapter must suck the reader in like a vacuum cleaner. It is extremely difficult to get published mainstream. It’s like getting discovered as a Hollywood actress. Your chances are miniscule. If you do get published, the journey isn’t over. The audience has to read it, and sometimes they just don’t. You could approach Amy Lutz and others and ask them to write this book, but you have to know what you are asking them to do. It isn’t small. Having said that, we could all write small blog posts and articles like this one:https://www.fractuslearning.com/autism-neurodiversity-movement-self-advocates-know-best/ However, be prepared to be bullied online and perhaps receive death threats when you do. When Bettelheim wrote his ridiculous book, it was a best seller. The book by Rimland which refuted Bettelheim was not. Silberman’s book ( I haven’t read it) on neurodiversity was also a best seller. He has many followers. This is a cult. It is difficult to know what to do to make our adult children’s voices heard. Not an easy problem to solve.

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    • Anonymous
      August 25, 2020 at 12:30 pm

      First, what is CFR?
      In what court did you bring the lawsuit? And what did your complaint say? Just trying to figure out what the issues are.
      Also, what would your book say and what would you hope to accomplish by writing it?
      You may be able to appeal…
      Depending on what the issues are it may be helpful to get people from as many states as possible.

      Liked by 1 person

      • August 25, 2020 at 6:17 pm

        Sorry CFR’s are the housing folks I sometime get the letters wrong

        I will work up an outline from the stuff I have Maybe even have one someplace.

        It is on appeal to the US 7th Court of appeals but the case is simple DRW discriminates against Rosa and the others in Wisconsin by actively working against their RIGHTS Rosa and 6000 other in Wisconsin have 4 RIGHTS The right to work for less than the minimum wage (granted by Section 14 (c) of the Fair Labor Act of 1938. The right to work itself The right to a Person Centered Service Plan (which should have specific language stating that the Workshop Work is critical to their health and social relations). Also the right of association. She can not be segregated and if she is exploited there are administrative processes to correct the wrong.

        Yes it would be great for folks to sue their State Protection and Advocacy agencies ie the first word is Protection and they are to protect what Rosa and the others RIGHTS which for some reason no one talks of. After listening DRW and the rest of the folks talk about being segregated and exploited I cam to realize that they are both bogus claims and LIES as well. i then began to realize the RIGHTS that Rosa and the others have

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      • September 21, 2020 at 12:10 am

        Yes I know that you did not say that. What you are witnessing is Institutional Discrimination IT IS ALL LIES or at least the vast majority. There always has to be a little truth but then when it is wrapped in the lies of Segregation and Exploitation and misreading of Olmstead it is all lies. The truly amazing thing is that there is all this effort to deny 170,000 Disabled Individuals their RIGHT to Work Why all this effort WHY.??? If you know the story of the 1880 Conference in Milan Italy where Oral language for the deaf was promoted over Sign Language you will understand what is happening to my daughter and 170,000 others. Alexander Graham Bell lead the charge to make Oral language the only language for the deaf at great loss to 10’s of thousands.

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    • Anonymous
      • September 20, 2020 at 12:36 pm

        I sent this off this morning Hopefully those who can write will take pieces of this so that we have a very strong response to the BS. As I concluded it is a very good example of Institutional Discrimination. The Lies build upon the Lies etc The holes in the original arguments that WE have not augured are still there but maybe in a way more focused.

        Good morning all

        Hopefully you are planning to send out by Friday a piece on OUR preliminary response to Subminimum Wages …..

        The elements that I see

        The use of “Subminimum wages” I know it is not part of any Federal Law (99% sure) and I have not seen it as part of any Fed Regulation If it is not either in the Law or Rgulations then what is the meaning of the 350 page report from the get go If it is in a Reg it will be recent and then the question is what is it definition Getting out these facts so that we are all on the same page will be important.

        Part of the Subminimum wage discussion is its use of a negative concepts to describe what WE know the wage to be a commensurate wage, a proportional wage. Both concepts put the wage in the light of the meaning of Section 14 (c) of the Fair Labor Act of 1938 (FLA 1938) as amended in 1986.

        Then to talk about the Section 14 (c) of the FLA 1938 and there is NO Section 14 (c) as part of the FLA 1938. So we point out that all these lawyers ….. Section 14 (c) is part of the FLA 1938 as Amended in 1986 where some of the Regulations are included in the amended Law.

        No mention of the Regs to implement FLA1938 much less the FLA 1938 Amended.

        The “report” even suggests that there is an Administrative FAILUER and the conclusion of the US CRC to “solve” this FAILURE is to throw the baby out with the bathwater.

        Then we get to the longstanding attacks Segregation Exploitation Olmstead What CIVIL RIGHTS are the talking about Pre- Vocational Basic Business Income and Expenses – REAL WORK.

        While pointing out that what the US CRC asserts about these issues are in large part all LIES

        We will need the best brief on each of these points that we can write

        Segregation Just the use of the word “SEGREGATION” suggests strongly suggests that when the US CRC uses the word “segregation” it is ILLEGAL and NOT socially acceptable.

        Rosa as an adult can NEVER be segregated, She has freedom to associate with whomever, whenever and wherever that she want to. Concepts to explore Black colleges and where people choose to live The document implies that Rosa and the others as adults can be told where they need to live and work and that they MUST associate with “normal” people. No place else in society do we have such ideas much less the attempt to restrict such associations.

        Also the concept of skills and intellect as gateway to participation. ie for my son to get into MIT helped that he was from Wisconsin but he was still smart but he noted not as smart as others at MIT. We have no issue with such criteria

        So a Sheltered Workshop has a criteria that to participate you have to be disabled. Simply a different use of intelligent or other ability as used for son Paul to be one of 2,000 freshmen at MIT. There is no illegal segregation and there is NO segregation. It is all freedom of choice one of OUR RIGHTS

        Exploitation (The following was written for another letter but works here as well. Written as if Rosa is writing it.) First let us look at “Exploited”. The concept is not difficult to understand. Someone has the power to get you to do something for less than what you should be paid. Well I and the others all have the RIGHT to WORK for less than the minimum wage and we have the RIGHT to WORK itself. How is that being exploited? It is not! As you know all Federal Law are enabled by Federal Regulation and in the regulation that accompany Section 14 (c) the Department of Labor (DOL) establishes specific rules that in essence makes the Special Minimum Wage a commensurate wage. Ie if I work at half the rate of a “normal” worker I will be paid at half the pay. The Law and Regulation allow me and the others to WORK in the real economy and be compensated for our real work. Yes sometimes that work can be repetitive and “boring” but then again when is not work not that way?

        So how did the NDRN come to the conclusion that I and the others were exploited. One way was calling the Special Minimum Wage a “sub-minimum wage”. One story in Segregated and Exploited is about a for profit Turkey Farm (yes both non-profits and for profit corporation can be certified by the DOL to pay the special minimum wage). The Turkey Farm had some disabled individuals who worked for them and one or a few of those workers were extremely skilled at breaking the necks of the turkeys. In fact they out produced all the other workers and yet they received very little compensation for their work. THEY WERE EXPLOITED and their exploitation had nothing to do with Section 14 (c) and everything to do with the DOL’s not enforcing the Law and Regulation. The exploitation was allowed by the FAILURE of the DOL to Protect the Workers. The State of Iowa also had responsibilities as well and they FAILED as well. The NDRN claims that it is Section 14 (c) that caused the exploitation and not failure of the DOL and various State Agencies that failed to enforce the Laws and Regulations that PROTECTED these workers.

        The NDRN knew the correct name and they knew that it is a commensurate wage but the truth would show Section 14 (c) to be reasonable and so the LIE of, I and the others, being paid a “sub-minimum wage” and being paid pennies while the RICH CEO of Goodwill and the CEO’s of other agencies were making their millions. Yes that is the LIE. It is despicable that these CEO’s were targeted when they only created WORK for the others to experience what I have experienced at VIP Services.

        The US CRC Never talks about OUR RIGHTS and the interaction of OUR RIGHTS and the Civil Rights that the US CRC claims are being violated when in FACT the US CRC is discrimination against Rosa and the other 170,000 and more importantly those who are in the Day programs because those programs will be the next to attack as that was the agenda of the THEY when this attack against 14(c) intensified 5 years ago. The THEY backed off the attack on Day programs.

        Olmstead There is at a legal argument explaining how the US CRC interpretation of Olmstead is in error that they do not acknowledge.

        Our alleged Civil Rights vs OUR RIGHTS I have yet figured out what they are talking when THEY use the term Civil Rights I have figured out at least 4 RIGHTS that all disabled individuals have There is not discussion about these RIGHTS vs the Civil Rights they claim we have that trump our RIGHTS

        Again this is from another piece that I have written

        RIGHTS OF ALL DISABLED INDIVIDUALS including those who work at Community Rehab Programs (CRP).

        It is up to the individual to exercise any or none of these RIGHTS.

        Section 14(c) of the Fair Labor Standard Act of 1938 as amended in 1986 grants all disabled individuals (6000+ in Wisconsin) who work at CRP’s (Sheltered Workshops), the RIGHT to WORK for less than the minimum wage.

        Section 14(c) also provided all disabled individuals with “the RIGHT to WORK itself” with two conditions 1) that their behavior is socially acceptable and 2) that there is an opening at the local CRP (workshop). As we know all working age individuals have the right to apply for any job that they want to. It is only if they are hired, they will have a job and be able to work. Whereas all disabled individuals who meet the 2 conditions listed above will be able to WORK.

        All disabled individuals have the right of association. What is special about CRP (workshops) is that with time, true friendships do develop with both the other workers as well as with the staff. What is critical to understand here is that personal individual associations are part of what defines us as individual human beings. These relationships, in large part, will be with others much like ourselves. To shut down CRP’s (workshops) because Disability Rights Wisconsin claims that CRP’s are segregated denies disabled individuals this most basic human right of associating with whoever they choose to be with.

        The fourth right. All disabled individuals have the right to a Person-Centered Service Plan as granted in SS 441.725. The Person-Centered Service Plan is a specific plan for each disabled individual that establishes what is least restrictive for that person and most beneficial for them as well. While the regulation is poorly written, and written as if some disabled individuals do not exist, it does provide all disabled individuals the right to a Service Plan that is specific to their needs and desires and dreams. Every disabled person has the right to a plan and that plan is all about them.

        There may be other rights that can be added but this is my growing list for now.

        Disability Rights Wisconsin has a duty, has a responsibility, to represent the RIGHTS that those who work at CRP’s, and as we know DRW is NOT only, NOT doing that, BUT they are working against those disabled individuals who benefit from working by eliminating our RIGHT to work for less than the minimum wage.

        Pre-Vocational Many of us will always be pre-vocational In general just as smart people remain smart people with intellectual impairments do not get smarter

        Basic Business Income and Expenses – Operations REAL WORK There is no demonstrated understanding of how for profit business and the lion’s share of the work is for, for profit companies. The legal concept of 14 (c) that allows Rosa and the others to WORK for less than the minimum wage is totally ignored by the Report. If this law is eliminated then Rosa and the other 170,000 WILL NEVER BE ABLE TO WORK itself unless the “great someone” is subsidizing their wages. Who will that “great someone” be? One comment was that the work was boring as if that is a reason not to do real work. (yes some of the jobs are boring as if boring work does not exist in the real world) of how the minimum wage and that will cost more that “HOUSING” them

        To include the draft of a complaint that can be filed pro se with the US CRC about the discriminatory claims made is Subminimum Wages ……

        And finally this is a great example of Institutional Discrimination Tell enough lies over a long enough period of time and quote the OLD lies to support a restatement the old lie as a NEW finding (lie) and declare that Section 14 (c) MUST GO.

        There are in round numbers 40,000,000 disabled and we represent 1/2 of 1 percent of all those disabled and yet the effort to change the lives of those they do not know. Think 1880 and Alexander Graham Bell declaring the sign language is detrimental to the deaf and the rest of the Sign Language story that does not end for 130 years with an acknowledged that it had done significant damage to tens of thousands of individuals. If we do not learn from the past WE WILL REPEAT all of its horrors.

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      • Anonymous
        September 20, 2020 at 4:26 pm

        Providers have been abusing the program and regulators haven’t been doing their jobs. So that’s reason to limit opportunities for the disabled.

        “…failures in regulation and oversight
        have allowed and continue to allow the program to operate without satisfying its legislative goal to meet the needs of people with disabilities to receive supports necessary to become ready for employment in the competitive economy.”

        “…regulators have “repeatedly found providers operating pursuant to Section 14(c) limiting people with disabilities participating in the program from
        realizing their full potential while allowing providers and associated businesses to profit from their labor.”

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      • September 20, 2020 at 6:50 pm

        And tell ne how that is rational That Rosa will forever be bared from WORKING because some bureaucrats could not administer a program. Humm by that standard we should not have any programs. Working is critical to her life. I am always intrigued but those who wish to be Anonymous What do you gain by that? Peace Tom Spellman
        PS At least you are respectful

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      • September 20, 2020 at 6:51 pm

        Sorry Is it not like throwing the baby out with the bathwater. 🙂

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      • Anonymous
        September 20, 2020 at 9:25 pm

        TMS–The quotes were taken directly from the Disability Scoop article on subminimum wage and none of that including the prior statement is my opinion, that is what the article is saying.

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  6. August 25, 2020 at 8:58 am

    Itanzman There are 300,000 folks out there and so there are more that are impacted by what Amy Lutz has very clearly written about about Autism and how that community is divided. Segregated and Exploited has been out for 11 years now.

    The book could be a paperback and maybe 50 to 70 pages The centers could buy them and distribute them Yes we will either break the cult and it is the same cult that impacts the Autism community as impacted the Deaf Community as impacts the Workshop Community as ….. have you read Amy’s stuff? I suspect that Bettelheim fits the model of the expert being all knowing etc That is what we need to attack but across the board One part of the book could be examples of the experts and the impact they have had ie Alexander Graham Bell who lead the charge against sign language. That is one of the most interesting aspects of these issues is the divisions and how a THEY attacks those who are an embarrassment to the dominate group. The the THEY have NO EMPATHY blows my mind. Title of the book

    WHERE IS YOUR EMPATHY?? Just kidding but ……

    I have asked for VOR to have a help corner where folks who need help or have ideas could seek others.

    Thanks for responding There are two other issues that need to be addressed.

    The NAACP long ago realized that they needed a legal defense fund and so it was established. VOR TCF and NCSA Legal Defense Fund

    To raise the $40,000+ advance for a writer knowing that the CFR’s and Workshops etc folk would buy the history/action book/manual What we are fighting got into the Dem;s Platform the THEY are tasting their victory. I’m good for a $1,000 of the advance It is not as if this community is poor.

    I wish I could do the computer stuff to set up a group but that is not ability at 77 Sorry.

    I can see a rough outline of topics that need to be part of the book and I KNOW that we MUST HAVE A BOOK if our children our “wards” are to survive We are seeing what the Workshop meant to Rosa as she has a medical condition that does not allow her to be at the Workshop now because of COVID and it is not a nice world.

    Lets keep the conversation going and make it happen

    Peace Tom

    Liked by 1 person

    • itanzman
      August 25, 2020 at 9:24 am

      I hate to be a Debbie Downer, but the folks you want to distribute the book to already know what the issues are and are already on our side. I think we need empathy from government agencies and the general public. As I said before, it isn’t so easy to do that. Wow, that Alexander Graham Bell thing is something I never heard about! I’ll have to say that it’s interesting and tempting. Yes, I’ve read some Amy Lutz’s articles, but again, it isn’t me that you have to convince. Having said all this, I do believe that a factual non-fiction book might be a slightly easier sell than fiction ( what I am writing).

      Like

      • August 25, 2020 at 10:48 am

        Hi Itanzman

        Please consider

        1) Many of us think they know but they do not know well enough to counter the THEY that is why the THEY have been as successful as they are I thought that what Rosa received were really “sub-minimum wages” I understood that was all that could be afforded but that they were really called “sub-minimum wages” As I assume you know They are NOT “sub-minimum wages” but simply being paid less than the minimum wage. If you are interested in reviewing some of this stuff I will gladly send it on.

        2) The book is for us to give it to others elected officials and our friends who need some authority other than my friend says ……. the THEY are all LIERS and the THEY themselves. The book becomes our POWER It it not for us but for those who believe the LIES of the THEY

        Hopefully these are at least two good reasons for the book

        Like

  7. Ann Sanok
    August 25, 2020 at 10:44 am

    Well said. The religous adherence to vague notions of “community based programming ” and the vile contemptuous reaction to any other proposal more suitable to the severely disabled is truly confounding…not to mention harmful.
    I don’t see it as the media’s fault. The leaders of agencies, parents and disability rights advocates who insist on mixing apples and oranges are the ones to blame.

    Liked by 1 person

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