For those disabled

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Mar 7, 2009.

  1. mezombie

    mezombie Member

    Here's an opportunity to be heard. I've highlighted some of the most pertinent parts of this annnouncement.

    IMHO, the NCD doesn't seem to be aware of (or is ignoring) those of us who are chronically ill, unable to work, and not able to benefit from any back-to-work programs. What many of us need, sadly, is support; financial (SSDI, SSD) and community (assistance with shopping, errands, etc.).

    Perhaps this is a good place to point out the misunderstandings and prejudices we face, and explain that we are dealing with very debilitating symptoms, often tied to objective markers, that should put finding the cause and cures of our diseases on the national agenda.



    March 6, 2009

    Dear Friends and Colleagues:

    On behalf of the National Council on Disability (NCD), it is my
    pleasure to invite you to attend NCD's next quarterly meeting, which
    will take place at the Academy for Educational Development (AED),
    1825 Connecticut Avenue, N.W. - 8th Floor Conference Center,
    Washington, DC 20009 beginning on Monday, March 30 through Wednesday,
    April 1, 2009.

    ****This meeting is open to the public, and free.****

    In carrying out our mission, we believe it is vital to hear from
    communities around the country on what works and what does not for
    people with disabilities. This quarterly meeting will provide us
    another opportunity for that exchange. Our agenda will include the
    release of our annual Progress Report to the President and Congress
    that details the challenges, issues and solutions impacting people
    with disabilities nationwide, and much of the information in that
    report came directly from those disability stakeholders. The progress
    report will be released at 3:30 p.m. Tuesday afternoon, March 31, and
    an expert panel will be available to react to the contents of the report.

    Besides the Progress Report release, our agenda will include sessions
    on emergency preparedness, healthcare, employment, civil rights and
    several other subjects of interest to the disability community. In
    addition to these committee reports, NCD will be releasing the latest
    NCD policy paper on the federal employment of people with
    disabilities, and that will occur on Tuesday morning, March 31, at 10:15 a.m.

    ****Later on that Tuesday afternoon we will hear from a panel of
    congressional staff members about the latest news from Capitol Hill,
    converse with a representative from the Obama Administration on the
    implementation of policies and programs important to the disability
    community, and will host a reception at the meeting location. This is
    an opportunity to meet NCD members and staff and offer your comments
    during the public comment sessions, and we hope you will attend and

    ****Specific times are designated to receive public comment, supported by
    a toll-free call-in line, and input is encouraged and greatly
    appreciated. Individuals or organizations can also provide written
    comments by e-mail, fax, or mail. Public comment sessions will be
    held Monday, March 30 from 11:30 a.m. until noon (EDT), and on
    Tuesday, March 31 from 1 p.m. until 1:30 p.m. The toll-free call-in
    number is 888-790-6568, and the pass code is "NCD Meeting."****

    ****You are invited to join us during the reception for meeting
    participants, audience members, and stakeholders from the disability
    community at the AED Conference Center on Tuesday, March 31 from 5:00
    p.m. to 6:30 p.m., immediately following our session for the day. ****

    Additional details about the meeting will be posted on the NCD
    website at as soon as they become available. You will
    also find the meeting agenda posted there approximately 10 days
    before the meeting.

    NCD is an independent federal agency, composed of 15 members
    appointed by the President, by and with the consent of the U.S.
    Senate. The purpose of the NCD is to promote policies, programs,
    practices, and procedures that guarantee equal opportunity for all
    individuals with disabilities, and that empower individuals with
    disabilities to achieve economic self-sufficiency, independent
    living, and inclusion and integration into all aspects of society. To
    carry out this mandate we gather public and stakeholder input,
    including that received at our public meetings held around the
    country; review and evaluate federal programs and legislation; and
    provide the President, Congress and federal agencies with advice and

    For more information, please contact NCD's Director of External
    Affairs, Mark S. Quigley, at or by telephone at
    202-272-2004 (V), 202-272-2074 (TTY), and please visit our Web site


    John R. Vaughn
    National Council on Disability

  2. AuntTammie

    AuntTammie New Member

    Thank you for posting this. I wonder if there is a way that we could write a letter and all "sign" it. I would definitely like to give some input, but I'd rather do it as part of a group of people. I'm a little leery of doing it via an individual letter and I would like it to say something that many of us agree upon. There is no way I could go there, and as far as the phone in time, it would totally depend how I am feeling (foggy or not, etc) whether or not what I would say would actually come out rt. In something written, though, it might have a chance of sounding better and more clear.
  3. mezombie

    mezombie Member

    A group letter would be great.

    One way to do that would be to sign up with ipetitions or another online petition site and post a letter there, then let people here know about it.

    This is waaaay beyond me (note my username!). But if you or someone else is up to doing this, go for it!

    I can barely string a sentence together!

    I can offer a few concepts: invisible illness, cognitive dysfunction, not amenable to rehabilitation.

    OK, back to duh mode...

  4. nixon

    nixon New Member

    I agree that a letter(petition) would be a great idea.....although I also would not know where to begin with anything like that.

  5. AuntTammie

    AuntTammie New Member

    maybe i will be able to do so eventually....or maybe someone else could do it....or at least start one and allow it to be edited on here (otehrs could add suggestions, etc)