the advocacy monitor

Independent Living News & Policy from the National Council on Independent Living


Help Our Money Follows the Person Advocacy – Share Your Experiences this Week!

As you know, NCIL aims to bring your issues and concerns to legislators on the Hill. Because Centers for Independent Living (CILs) are the only entities that are Congressionally-mandated to do transition work, it is imperative that we are able to tell members of Congress about the difficulties CILs are experiencing in participating in the Money Follows the Person (MFP) Program.

As such, we need your stories.

Please tell us what state you are in and:

  1. If you have been locked out of participating in the MFP Program;
  2. If you have had difficulty participating in the MFP Program and why; and
  3. If the bureaucracy has made it difficult / impossible for you to participate in the MFP Program.

Please share your responses with Sheryl Grossman, NCIL Community Living Advocate, at, by Friday, September 13, 2019.

In the Wake of Hurricane Dorian, Donate to NCIL’s Disaster Relief Fund

Hurricane Dorian is closing in on the coast of Florida, Georgia, and the Carolinas. Thousands of people have already been displaced in the Bahamas as the storm moved through. People with disabilities in the disaster-affected areas are at risk for institutionalization – and once in an institution, they may never get out.

The core service of diversion and transition takes on new urgency during a disaster. In fact, during Hurricane Florence, staff from one North Carolina Center for Independent Living “provided significant guidance and technical assistance that ultimately prevented all but six of over one hundred evacuees from being institutionalized”, according to the National Council on Disability.

But CILs can’t provide these services if they themselves are damaged or destroyed. That’s where you come in.

Your contribution to NCIL’s Disaster Relief Fund enables Centers for Independent Living that are damaged or destroyed in disasters to get back to providing crucial services for people with disabilities as soon as possible. Make a donation todaypeople with disabilities in the path of Hurricane Dorian are depending on you.

Organizers Forum: Fighting Racism & White Supremacy

As we hit 400 years since the beginning of slavery in the U.S., hundreds of Latinx immigrants are forced into camps, and the President himself encourages racism and violence, let’s talk about how we in disability communities can take action. What work needs to be done within the disability rights movement, and how can we act in solidarity with immigrant rights groups and others? More conversations like this are happening in disability spaces. Let’s use this call as an opportunity to keep learning and growing.

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2019 Annual Conference Photos Now Available!

We are very happy to announce that all 3,110 pictures from NCIL’s 2019 Annual Conference on Independent Living are now available on Flickr.

We have created an album of 300 select (captioned) photos that capture the overall feel of the 2019 Annual Conference.

If you would like a specific photo added to this collection, please caption the photo in the comments or email with the link and a description. You can comment on photos using a Flickr / Yahoo account.

We apologize that we do not have the capacity or knowledge to caption every picture. If you see a picture of yourself or others you know, please caption it for the benefit of all. We can also take requests for specific photos at the email address above.

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2019 Annual Conference Evaluation Surveys Now Available

Evaluation surveys for NCIL’s 2019 Annual Conference on Independent Living are now available online. If you have not done so already, please take a few minutes to let us know your opinions. The feedback of our attendees is critical to our ongoing efforts to bring our members an exceptional conference experience. We appreciate your participation and feedback.

Go to evaluation survey.

Transcript of the 2019 NCIL Awards Luncheon

The CART Transcript of protest at the NCIL 2019 Awards Banquet is available below. You can also read the full transcript.

Communication Access Realtime Translation (CART) captioning is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

SARAH LAUNDERVILLE: Thank you, Marca! So I want to acknowledge the folks who are here with posters, for a couple of reasons. One, I think, that their message is really powerful.

Especially in this time. And secondly, I want to acknowledge that not everybody can read those posters. Is there anyone who would like to speak from this group? No? Okay.

So, go ahead.

>> I would be happy to support, if anybody would like me to read posters. If you could show me your posters one at a time, I would be glad to read them for access. I’m going to be going from my right to left. “America is the land of immigrants”. Do you want to read the next one?

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MEDIA ADVISORY: Disability Rights Advocates to March on Washington Tuesday, July 23

For Immediate Release

July 22, 2019

Contact: Eleanor Canter, NCIL Communications Coordinator – 231-755-5063 or

Washington, DC — On Tuesday, July 23, approximately 1000 people with disabilities, advocates, and allies from across the nation will march to the US Capitol in support of disability rights. Participants will meet at 11th and G Streets NW at 9:30 a.m. and the 1.2 mile March to the Capitol will begin promptly at 10:00 a.m. All members of the public and press are encouraged to attend.

This event will precede the 29th Anniversary of the Americans with Disabilities Act (ADA), which was signed by President George H.W. Bush on July 26, 1990.

The March route will end at the West Front Lawn of the US Capitol, where participants will gather for an empowering Rally for Disability Rights, which will feature Senators, Representatives, and Independent Living and disability rights advocates. Advocates will then make their way to the US Capitol Building to meet with their elected Members of Congress in order to promote NCIL’s Legislative and Advocacy Priorities, which are developed bi-annually by the organization’s membership.

Some of the priorities advocates will be addressing include funding for America’s Independent Living Program; protecting the ADA from Congressional attack; and protecting Medicaid and Home and Community Based Services.

Approximately 1000 people march to the US Capitol carrying signs and chanting in support of Independent Living and disability rights in 2017
Approximately 1000 people march to the US Capitol carrying signs and chanting in support of Independent Living and disability rights in 2017

The March and Rally for Disability Rights is being organized by the National Council on Independent Living as part of its 2019 Annual Conference on Independent Living, which will take place July 22-25 at the Grand Hyatt Washington.

The National Council on Independent Living (NCIL) is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands, including: individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

Preparing for the Annual Council Meeting: Open Positions, Floor Nominations, Eligibility, and Voting Rules

Dear NCIL Members:

The Annual Council Meeting is coming up and we know that many of you are interested in the process for elections and the vacancy in the President’s position. The following email lays out the rules and eligibility for making nominations and running for the open positions, which are outlined below.

Rules of Order

To ensure fair and orderly meetings that allow all NCIL members to participate, NCIL uses Robert’s Rules of Order for the conduct of annual meetings to the greatest extent possible. However, NCIL feels that under no circumstances should “undue strictness” be allowed to intimidate members or limit full participation. The conduct of ALL business is controlled by the general will of the whole membership, with the right of the majority to decide. See NCIL’s quick-reference guide to the rules of order. A parliamentarian will be present and will have the final call on Robert’s Rules procedures.


At the 2019 Annual Council Meeting, NCIL members will have the opportunity to vote for Governing Board members and resolutions that will guide NCIL in the coming years. This year, elections will be held for: President, Treasurer, and three Members-At-Large.

While the deadline to nominate for these positions online has passed, we always take nominations from the floor for all positions.

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Statement from NCIL’s Board of Directors

The National Council on Independent Living (NCIL) has unanimously accepted Bruce Darling’s resignation. We unequivocally denounce the statements articulated by Mr. Darling yesterday. We want to clarify that his statements are not NCIL talking points, and that his assertion that he was speaking in the capacity of NCIL President was in violation of NCIL’s policies.

Sarah Launderville, NCIL Vice President, effective immediately, will assume the powers and functions of President for the remainder of the term until the Wednesday, July 24 Annual Council Meeting, where the position will be up for election.

NCIL acknowledges that the treatment of border detainees is reprehensible. We also recognize that people with disabilities are amongst the individuals being detained in the border camps for asylum-seeking and undocumented immigrants to the U.S.

Additionally, reports concerning the treatment of detainees within these camps clearly indicates that the conditions are resulting in detainees acquiring trauma-related disabilities. Finally, NCIL recognizes that the personal and civil rights of the disability community in the U.S. are currently being threatened within the border camps and, therefore, condemns any rhetoric that attempts to pit the disability community against those who are seeking asylum in the U.S.

The message from the dais at NCIL is this: we stand in solidarity with detainees, the Latinx community, those who immigrate to this country for whatever reason, and all marginalized people.

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Statement from NCIL’s President

Many of you may have heard part of my remarks during a protest. In trying to explain my frustration that Democrats have failed to recognize and address the unjust incarceration of people with disabilities in nursing facilities and other institutions, I used absolutely inappropriate language. My concern for those locked in institutions because they are disabled should never have been stated in a way that minimized concern for those locked in other institutions that are equally abhorrent. That was wrong.

I cannot apologize strongly enough. I have long fought the use of the Oppression Olympics and my lack of forethought that day allowed me to slip into it myself. Ableism, racism, and xenophobia have and continue to oppress many in our community and my words only served to erase – and simultaneously add to – that oppression. I make no excuses for this, and I am truly sorry for the harm it has caused.

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