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IOM refused my request to speak at the meeting via telephone

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Andrew, Jan 10, 2014.

  1. Andrew

    Andrew Senior Member

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    IOM refused my request to speak at the meeting via telephone. They said that I can submit it in writing. Here's my reply:

    I suggest that everyone else who wants testify via telephone contact them. mecfs@nas.edu

    If they refuse, we can file an ADA complaint.
     
  2. SickOfSickness

    SickOfSickness Senior Member

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    You or anyone could make an online petition, so we can sign to support your ideas. Also so you can show the ADA how much it's needed to be changed.
     
  3. Andrew

    Andrew Senior Member

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    taniaaust1 and beaker like this.
  4. Ecoclimber

    Ecoclimber Senior Member

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    Interesting..so you are saying that the Federal government task with enforcing the Federal ADA Statute is at the same time violating the Federal ADA Statute. Wouldn't surprise me one bit given what has transpired over the last three months.

    My administration is committed to creating an unprecedented level of openness in government. We will work together to ensure the public trust and establish a system of transparency, public participation, and collaboration. Openness will strengthen our democracy and promote efficiency and effectiveness in Government.

    — President Barack Obama
     
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Andrew, I think it may not be the ADA, but instead the Rehabilitation Act of 1973 that applies here; not sure, just a heads up. I don't have time to look into it now, I am very sick, sorry. Jennie Spotila seems to know a lot of this administrative law stuff off the top off her head, so you might ask her.

    Thanks for bringing this up with them. Quite important to create this record of having objected to them. Hopefully they will accommodate us.

    Eco, IoM isn't a govt agency, it's a non-profit, but apparently at least some parts of FACA (Advisory Committee Act) would apply. Again Jennie might know more about this.
     
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I wrote to them in support:

     
  7. Nielk

    Nielk

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    I'm with you @Andrew.

    I just sent out this letter.

    Hi,

    My name is Gabby Klein and I am a patient suffering from ME/CFS for the past eleven years. I am disabled by the disease and unable to fly nor attend a public meeting in my current physical shape.

    I do wish to give my verbal comment to the IOM committee as I have been doing at the Chronic Fatigue Syndrome Advisory Committee (CFSAC) meetings over the phone.

    I feel that the fact that this accommodation has not been offered by the IOM is an insult and an insensitivity towards the seriousness and the disability of this disease.

    I would think that with the one million dollars that have been spent by the sponsors of this study, there would be money allocated to accommodate people with serious disability.

    Please comply with laws which prohibit discrimination and ensures equal opportunity for persons with disability.

    Sincerely,

    Gabby Klein
     
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  8. Andrew

    Andrew Senior Member

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    Thanks.
     
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  9. AnneFightsME

    AnneFightsME

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    Andrew, I did research on this for another FB page. This is long but it gives the important details. The fact that they take written testimony and that they are providing a room for us to lie down in as needed tells me they think they must comply.

    I would encourage everyone who can to email or call IOM ASAP and complain about this. Doing it by today would be best but after today will work too. You can complain for yourself, someone else, or both.

    Anyway, here is the post. NOTE: I AM *NOT* A LAWYER, I just researched this with reliable sources.
    (I will also upload it as a file as it is easier to read in Word).


    ADA and the IOM (1/20/14)

    Many wondered if the ADA had been violated when the IOM only allowed public comments presented in person. I researched it and I found/was told the short answer is “maybe.” Complaints are worth submitting but may take time to resolve SO I WAS ADVISED WE SHOULD COVER OUR BETS BY SUBMITTING WRITTEN COMMENTS BY WEDNESDAY, JANUARY 22. I would suggest at least a very short “placeholder” (example below) be sent so that the IOM cannot say you did not express interest in time. The complaint process is easy and free but the background info you need is a bit complex.

    As a “placeholder,” I would suggest even a one or two sentence comment like, “My health prevents me from responding within the given short timeframe. I want it to be known I want this contract to be terminated. I do not believe it is possible for this committee, as directed and constrained by the SOW, to produce a definition of ME/CFS superior to the expert definition known as the Canadian Consensus Criteria. I therefore call on this committee to add their weight to that of disease experts and advocates calling for its official adoption by HHS. I will submit further comments as my health allows.”


    1. Am I covered by the ADA (and the related Rehabilitation Act)? Yes, pretty much all of us with ME are covered by at least parts of the law. In specific circumstances, the law covers anyone with “a physical or mental impairment the substantially limits one or more major life activities.” That can mean self-care, working, or even walking and sleep. Multiple sclerosis is given as an example in a Department of Justice briefing. Someone who is housebound by ME like me is a slam dunk. Most of us have illness-imposed limits on daily activities, so we fit. Someone with a very mild case might have a harder time if they had no specific impairments.

    1. When does the law apply?

      It is very specific, like the rest of law. Not all of it applies to everyone in every situation. For example, the section on employment/employers (Title I – that is, the ADA’s first section) wouldn’t apply to me since I am unable to work. Title II is about state and local governments and so wouldn’t apply to the IOM. Section III on “public accommodation” MIGHT apply to the IOM (more in comments further below). The Rehabilitation Act is essentially the ADA as it applies to the federal government and those connected to it in specific ways. Again, the IOM MIGHT be covered under this law. It is even possible that *both* laws cover the IOM, in which case the stricter law applies.

    The law applies in situations where the nature of the person’s disability might cause unequal access to goods or benefits. The accommodations have to be needed because of the impairment. Inability to travel, by itself, wouldn’t be covered since there are many reasons people can’t travel (finances, fear, other commitments). An organization would not have to make accommodations simply because of the inability to travel. However, if attending in person is impossible because of impairment (ME-caused brainfog, PEM, etc.,), an organization would have to make accommodation if 1) it does not impose “undue burden” (too expensive or hard) and 2) it does not alter the substantially alter the activity (such as lighting for the sight impaired at a planetarium show). Allowing remote attendance at a meeting is considered an appropriate accommodation. The individual I spoke with at the clearinghouse did not know about remote comments but, as they are a regular occurrence at CFSAC, it would be hard for IOM to argue they are not also known appropriate accommodation.

    In summary, specific rules must be met before the law applies. The IOM MIGHT be covered by one or both laws. Simply saying, “I can’t travel,” isn’t enough. You must say that you cannot travel because of your impairments. Suggesting mitigation, such as being allowed to speak via Skype or by video, is not only OK but encouraged if you make a complaint.

    1. So does the law apply to the IOM or not?

    This is where it gets murky. The IOM doesn’t neatly fit categories. As an organization, and for this contract, it meets one test of the ADA Title III – it does receive federal monies. This is a public meeting, so it also meets a second criterion of being open to the public. The third criterion it must meet is whether it falls under a specific list of activities that affect commerce (far broader category than it sounds). The auditorium where the meeting will be held should be covered as a place of public gathering (though this may only apply to the physical aspects of the site). The IOM might be considered an “educational institution” (usually referring to schools or medical residency programs) but it seems to specifically avoid that term on its website (yet it’s “suffix” is .edu). Its website notes in numerous places that it acts as an advisor, so it might be considered a “service establishment” on par with other professional offices. One could even argue it was a social service organization (which usually refers to food banks, senior centers, etc.) because it is serving the public good by advising policy-makers on medical controversies. The Rehab act, section 504, specifically covers discrimination in programs receiving federal funding. The IOM contract might be considered a federal program, in which case the Rehab Act would require that those with disabilities not excluded or denied the benefits of that program.

    The problem in all this lies in the word “might.” It will take a lawyer** well-versed in disability law, looking at the specifics of the situation, to know whether or not these laws apply. I haven’t reached someone like that yet. I suspect that at least one of them does, or the IOM thinks it does (which results in the same action) because the IOM is providing a webcast and a room for attendees to rest during the meeting. Then again, HHS may have requested these things to keep the patient community quiet.
    **The Department of Justice typically does the investigation into claims of discrimination, not the "wronged" party. No one will need to hire a lawyer. The DOJ will try to get both parties to mediation to resolve the problem. They will, in some cases, prosecute ON BEHALF OF THE PUBLIC (not any individual) if the problem is either significant (that is, affects many) or ongoing (wouldn't apply to us). To get real work done on this, we need DOJ attention and that means a lot of complaints --they need to know the large ME/CFS community finds the lack of accommodation a form of discrimination. Since IOM should already know how ill we are, and since this directly affects us, *especially the homebound and bedridden," the lack of accommodation is egregious (big and bad).


    1. So, if the law applies, does that mean they have to let me testify?


      Not quite. It means they need to give you an “equal opportunity to participate” and that they are prohibited from a “discriminatory denial of services or benefits to individuals with disabilities.” Any complaint must claim that public comment, directly presented to the committee (with audio and visuals) is substantially different than written comments simply given to them. I would state that I feel strongly that in-person testimony carries much more weight than written testimony, and that by NOT offering the opportunity at sign up for remote personal testimony during the public meeting, I (and others at home) are being denied equal participation, and that my voice will not be heard. This is where I would demand an equal or greater number (based on the greater number of pool of speakers) of slots be opened up for remote testimony. I would also state either that you would have chosen this opportunity at sign up (if you have already signed up) or that you have not yet signed up because this opportunity was unavailable. This is also where you should refer to the screen shots that clearly show the inequality. These will be put up in the files tab at the top of the Campaigns page.

    2. If the law applies, do they have to allow video testimony?


      The law requires “effective communication.” That is purposely not defined so that individual circumstances can be considered. CFSAC meetings give a good precedent.


    3. SO WHAT DO I DO NOW?

      Complain to both IOM and Department of Justice. It is easy and free. You could do so with two short phone calls, or a single short (4-6 sentences) letter sent to both. There are two screen shots of the IOM sign-up website, taken at approximately the same time, that clearly show that remote participants did not have the same opportunity as in-person participants (thank, Jeannette!). I would include copies of these in any complaint you make.

      First, consider asking IOM to provide you with “an equal opportunity to participate” in a way that provides “effective communication” despite your disabilities. (Use those words.) You could get lucky (unlikely) and it will show the Department of Justice you are reasonable (likely). State that you do not find a written statement to be an equal opportunity. You can elaborate on why you don’t think it is equal if you want. You do NOT have to give ANY medical information beyond the statement your disabilities are such that in-person attendance would be unduly burdensome – less information is probably better here. If you want, you can also suggest how they might accommodate your disability (video conference, pre-recorded testimony, phone-in testimony, etc.). Attach or offer to send the two screen shots above. You might also say that you are considering a complaint to the Department of Justice. You could do this entire letter in as little as 4-6 sentences (cribbing from me is allowed!) + 2 attachments. Submit via phone, email, or fax (Phone: 202-334-3169, Email: mecfs@nas.edu, Fax 202-334-2685).

      Next, file a complaint with the Department of Justice by email or letter (or phone if you cannot write) – address below. I see little downside to this. This can be an attachment of an exact copy of your letter to the IOM. It is free and easy. If you want to do this separately (or exclusively), include your name, address and email; IOM’s name and contact information; why you think they violated your rights (hint: unequal access for participation due to your medical condition); supporting info (see the files section for the two screen shots), and how to best communicate with you. If you cannot write due to your disability, you can call and they will write it down for you (this usually if for the blind but it would go for some of us, too) – that usually takes about 3 weeks to for them to get to you. A letter is the least desirable way to submit due to security concerns.

    A win is not a slam dunk because IOM is in a gray area but the applicable laws (ADA and Rehabilitation Act) encourage broad interpretation. Mediation is strongly encouraged as a first course by the Department of Justice, which might prompt the IOM to simply remedy their action by providing more time for public comment. If initial efforts fail there is nothing compelling you to go further. If many claim “injury,” the Department of Justice might be more inclined to do more (they choose how aggressively to pursue each claim).

    Contact info:

    The IOM ME/CFS Study

    Keck Center
    500 Fifth St. NW
    Washington, DC 20001

    Phone: 202-334-3169
    Fax: 202-334-2685
    Email: mecfs@nas.edu


    US Department of Justice
    950 Pennsylvania Avenue, NW
    Civil Rights Division
    Disability Rights Section – 1425 NYAV
    Washington, D.C. 20530

    800-514-0301

    fax: (202) 307-1197

    Email: ADA.complaint@usdoj.gov
     
    Last edited: Jan 22, 2014
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  10. Andrew

    Andrew Senior Member

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    Thanks for all the work. As it happens I got something in yesterday.

    Anyway, I'm going to read your message again tomorrow when I can focus better.

    Thanks again.
     
  11. SickOfSickness

    SickOfSickness Senior Member

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    Bump... everyone who can, should do this ASAP, today is best:

     
  12. taniaaust1

    taniaaust1

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    I too suggest that someone start up a petition on this and of how its not giving us equal opportunity. Andrew I dont know where else to do petitions but you could start one up easily where Ive currently got the ones Ive started for the other bullshit going on at http://www.thepetitionsite.com/create.html?cid=headerClick (you may have to sign up at he site first).

    If someone starts up a petition over this (lack of equal opportunity for the sickest ME people).. you could add in my link at the very bottom for the other petition to do with IOM http://www.thepetitionsite.com/799/278/645/stop-non-experts-from-redefining-diseases/ to help the other one get more signatures too.

    We should be putting the injustices going on out in the public arena as much as possible.

    I hope 2014 will be the year that ME patients decided no more bull and started rocking the boat... with law suits or whatever.
     
    Last edited: Jan 23, 2014
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  13. SickOfSickness

    SickOfSickness Senior Member

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    I think your message was heard. They are letting us send a video or audio file.

    I hope our community will submit many! Even a short one will add to our numbers and they will see how many are against this.

    They sent this email when I complained like you suggested above:

     
  14. Andrew

    Andrew Senior Member

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    I don't think this is an accommodation. There is no captive audience. There is no group process that allows the panel to ask questions, and have everyone (panel, guests, onlookers) hear the same thing.

    The IOM led me to believe they do not have the technology to present live from a remote location. They had it all along. I already filed my complaint.
     
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  15. Nielk

    Nielk

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    I agree with you, Andrew. They had the capability and offered it to the invited presenters. They should have made this available to all patients and advocates who wanted their voice heard.
     
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  16. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Didn't Jennie Spotila deliver her address over the phone, apparently at late notice?
     
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  17. Ren

    Ren Primum Non Nocere

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    I haven't been able to read all of the info in this thread, but wanted to share the following, sent to the email addresses in post 11 above (thank you!):

    "Dear IOM representative and Disability Rights representative,

    I am writing to request that a transcript (a written document) of the January 27th IOM ME/CFS public meeting be made available - such a transcript should include comments and questions made by the panel during this tax-financed public meeting. My request for such a transcript has thus far been ignored.

    At this time, individuals who are deaf or who experience other auditory impairments (such as hyperacusis, which is exceedingly common in individuals with ME,) do not have equal access to this government-sponsored public meeting.

    There have already been grave concerns because some patients who are most-disabled were not allowed to participate in the public IOM discourse through telephone or video means. This is especially concerning since IOM itself, in its most recent Gulf War text, promoted "telemental health programs" whereby patients and doctors use audio-and-video technology to "meet" in lieu of face-to-face consultations. In fact, government agencies such as VA already have contracts in place (with Verizon for example) for this very purpose.

    I appreciate your assistance in this matter and expect that corrective measures will be undertaken to ensure that individuals with disability will be allowed to participate and access the tax-financed proceedings which will determine the quality and duration of their lives.

    Thank you..."
     
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  18. Ren

    Ren Primum Non Nocere

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    I received the following response from the IOM, which also addresses a request for a copy of the contract from HHS and IOM:

    "An archive of the Jan. 27 video webcast of the public meeting is available at http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-JAN-27/Videos/Session Background/1-Process-Video.aspx. We are unable to provide a written transcript due to budgetary and time constraints. It is not our policy to release contracts with our sponsors to the public."

    ---------

    Re: "We are unable to provide a written transcript due to budgetary and time constraints."

    Does this fall back to HHS? Is/Was it legal for HHS to enter into a study/contract where equal public access and opportunity are required by law - but for which HHS has neglected to provide funding?

    Imo, this goes hand-in-hand with prior IOM and HHS policy in that individuals who are the very sickest are excluded from policy - both in research and in opportunity to protest this negligence.

    Re: "It is not our policy to release contracts with our sponsors to the public."

    Nuremberg defense.


    Edit: I'd like to add as well that I'm troubled by the following statement, on the IOM ME/CFS project page, regarding public comment: "All written comments will be included in the Public Access File created for the study, and should not include any personal medical information."

    Forbidding patients to talk about their medical experience silences the public and is another means by which those who are sick ( especially those who are the most sick and/or who have been treated the worst) are censored by powerful institutions. Is this legal??

    http://iom.edu/Activities/Disease/D...elitisChronicFatigueSyndrome/2014-JAN-27.aspx
     
    Last edited: Feb 6, 2014
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