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.
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.”
- 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.
- 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.
- 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).
- 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.
- 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.
- 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
E
mail:
ADA.complaint@usdoj.gov