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


Wrap Up: NCIL 2019 Annual Conference on Independent Living

Logo: 2019 Annual Conference on Independent Living - featuring a white starburst graphic

This Annual Conference Wrap Up is also available in Word.



NCIL’s 2019 Annual Conference was truly a memorable experience. Over 1,000 advocates descended on Washington, DC to ignite the Independent Living Movement both inside and out. Together, we navigated difficult conversations, learned from our fellow advocates, and showed the world the power of the Independent Living Movement. We want to thank everyone who supported the conference, including all of our attendees, sponsors, and exhibitors. You are the ones who make NCIL’s work, including our conference, possible year after year.

We were pleased to once again have two excellent pre-conference sessions: “NCIL & ILA/ACL – The Good, the Bad, and the Ugly”, and a dialogue on accessible voting with U.S. Election Assistance Commissioners. Given the recent Administration for Community Living (ACL) changes and the upcoming 2020 Presidential election, both of these sessions were extremely timely and provided much needed information to our attendees.

Our listening session on racism and xenophobia within the Independent Living Movement on Monday morning was a raw, honest discussion, and a reminder of how far the movement has to go in order to truly welcome all people. In a time when the spirit of the Independent Living Movement is threatened at every turn by outside forces, it is important to take time to look inward, examine our own prejudices, and listen to the voices of those most marginalized within our movement. These conversations continued throughout the conference week and will continue as NCIL works to become more inclusive and combat racism and xenophobia in the movement.

For the second year in a row, we braved the rain for our annual March and Rally, but our spirits weren’t dampened! We marched through the streets of DC, chanting and turning heads everywhere we went. Members of Congress, staffers, and IL advocates alike ignited the crowd at the rally, firing everyone up for Hill Visits. See below for more details on this year’s Rally.

This year, we debuted our conference app. This app, created with event technology company Cvent, allowed conference attendees to view the conference schedule, navigate maps of the conference floor, and access information about Hill visits, all while on the go and without the hassle of hard copy materials. If you have opinions on the app, please share them with us when you fill out your conference evaluation! We recognize that not all conference attendees will want to use the app, but we look forward to refining it in future years with the goal of cutting down the amount of hard copy materials we need to produce.

There are so many more highlights of the conference in this wrap-up. We hope you’ll take the time to read it and look through the photos. If you attended the conference, please take a few moments to fill out our conference evaluation and tell us about your experience.

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 [email protected] 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.

Special thanks to Michael Clegg for his amazing photos and, as always, thanks to our members, who made these photographs what they are: the story of our people gathering in our nation’s Capital to bring about equality and freedom for people with disabilities!

NCIL March, Rally, and Hill Visits

The rain didn’t stop this year’s Annual March and Rally from being yet another huge success! Almost 1,000 NCIL members from across the country were joined by local disability rights advocates as we marched through the streets of DC holding signs, making noise, and creating a disturbance in the streets in the name of disability rights! 

The MCI D45 CRT LE Commuter Coach served as the “chase vehicle” for the March and offered assistance to anyone needing it as we made our way to the Capitol.

After arriving at the West Front Lawn of the US Capitol, Rally participants listened to powerful remarks from over a dozen speakers and got revved up to meet with their legislators on the Hill. The Rally was emceed by Steve Higgins, and speakers included:

  • Kelly Buckland
  • Brian Peters
  • Representative Jan Schakowsky (D-IL)
  • Jessica Jimenez
  • Noah Ohashi (joined by a group of conference attendees from Japan)
  • Yvonne Smith
  • Representative Debbie Dingell (D-MI)
  • Senate Minority Leader Chuck Schumer (D-NY)
  • Selene Luna
  • Senator Bob Casey (D-PA)
  • Shannon Minnick
  • Ami Hyten
  • Sheryl Grossman
  • Cliff Perez
  • Sarah Launderville

Our speakers discussed their commitment to preserving the protections guaranteed to us under the Americans with Disabilities Act and pushing forward other important community priorities. Speakers talked about the importance of community integration and the many barriers disabled people still face in our communities. The NCIL Rally was an important space for us to voice our pride and determination and to hear from legislators who support our advocacy. This year’s event once again gave us an opportunity to show our collective strength as a community.

After the Rally, NCIL members stormed the Hill to meet with their elected officials and talk about the key issues we’re fighting for. NCIL members talked about key priority issues important to their elected officials’ disabled constituents and the entire IL community.

The March, Rally and Hill Visits are an exciting and important part of the Annual NCIL Conference, and as always, this year was as exciting as ever. Thank you to everyone who made this day a powerful and effective event!

Annual Council Meeting

NCIL’s primary agenda items for the 2019 Annual Council Meeting were to elect new members for the Governing Board and consider several resolutions from the membership. This year’s elections included the following positions: President, Treasurer, and three new Members At-Large. In addition, a special election was held because a current board member was elected to another position, leaving a vacancy. 

  • Sarah Launderville is NCIL’s new Governing Board President. Sarah is the Executive Director of the Vermont Center for Independent Living (CIL) in Montpelier, Vermont. Sarah has previously served as NCIL’s Vice-President and Region 1 Representative.
  • Sarah’s election as President left an opening in the Vice-President position. A special election was held to fill the vacancy. Cliff Perez was elected as NCIL’s Vice-President. Cliff Perez is a Systems Advocate at the Independent Living Center of the Hudson Valley in Troy, NY. Cliff was previously NCIL’s Region 2 Representative. 
  • Reyma McCoy McDeid was elected to serve as NCIL’s Treasurer. Reyma is Executive Director of Central Iowa Center for Independent Living (CICIL) in Des Moines, Iowa. Reyma previously served as Member at-Large on NCIL’s Board. 

There were three Member At-Large positions up for election this year. These are the new Members At-Large:

  • Kimberly Tissot is the Executive Director of ABLE, SC in Columbia and upstate South Carolina. 
  • Allilsa Fernandez is an advocate from Jamaica, Queens in New York.
  • Darrel Christenson is the Vice-President of Community Integration of Ability360 in Phoenix, Arizona. 

Regional Representatives rotate elections every other year, with even-numbered regions elected in even-numbered years and odd-numbered regions elected in odd-numbered years. Elections for the Regional Representatives in odd-numbered regions were held prior to the conference and announced at the Annual Council Meeting:

  • Region 1 re-elected Steve Higgins, Executive Director for Independence Associates, Inc. in East Bridgewater, Massachusetts.
  • Despite our best efforts, we did not receive any nominations from Region 3 before the conference. We have extended the nomination window and an election will be held very soon. 
  • Maureen Ryan was re-elected as Region 5 Representative, Executive Director of the Wisconsin Coalition of Independent Living Centers from Madison, Wisconsin.
  • Ami Hyten was re-elected Region 7 Representative. Ami is Executive Director of Topeka Independent Living Resource Center (TILRC) in Topeka, KS.
  • Sheri Burns, Executive Director for Silicon Valley ILC in San Jose, California, was re-elected Region 9 Representative.

Congratulations to all of our new and returning Governing Board members!

NCIL’s membership also considered several resolutions at the Annual Council Meeting. The following resolutions were adopted by NCIL’s membership. 

Resolution on Voter Verification Systems: This resolution calls for NCIL to take all steps necessary, beginning with advocacy with the Federal Election Assistance Commission and the National Association of Secretaries of State, for the recognition that electronic pollbooks or voter verification systems should be accessible to persons who have a disability and for the adoption of a requirement that every jurisdiction must implement an accessible voter verification system. Read the Resolution on Voter Verification Systems.

Resolution on Access Ready Environments: This resolution calls for NCIL to advocate for governments and businesses to voluntarily implement all steps necessary to set Access Ready information technology standards, ascertain the necessary upgrades to create an Access Ready environment, advocate that the US DOJ take action against those who avoid or refuse to implement or provide Access Ready information technology, and to support persons with disabilities, friends, families and civil rights organizations to bring attention for immediate action to alter technology development and implementation to include accessibility at the outset. Read the Resolution on Access Ready Environments.

Resolution for Inclusive Emergency Management: This resolution calls for NCIL to advocate for the Red Cross and others to provide equal access to all emergency and disaster programs and services before, during and after disasters in the most integrated setting appropriate to the needs of disaster impacted people with disabilities, without exception required by law. The resolution also states that NCIL will call on the Department of Justice and the Department of Homeland Security to monitor and enforce the Rehabilitation Act and the Americans with Disabilities Act, oppose the Centers for Medicare and Medicaid Services issuing waivers in disasters that allow institutionalization of people with disabilities, support and advocate for REAADI and DRMA, partner with the Partnership for Inclusive Disaster Strategies to promote inclusive disaster initiatives to the IL community, and press the Federal Emergency Management Agency and the Administration for Community Living to lead and provide adequate human and funding resources to a coordinated effort across federal government agencies, states, etc. in collaboration with people who are aging and people with disabilities in leadership roles, to achieve and maintain on-going planning, preparation, and implementation of inclusive emergency and disaster initiatives. Read the Resolution for Inclusive Emergency Management.


Each year NCIL uses the Awards Banquet to recognize and thank advocates for their outstanding work during the past year. We strive to select and honor individuals that are not often awarded on a national stage. The Awards Banquet is truly a special event and we offer our deepest appreciation for this year’s winners, listed below.


  • Centene Corporation
  • Anthem


  • Max Starkloff Lifetime Achievement Award: Marca Bristo
  • President’s Award: Bob Williams
  • Corey Rowley National Advocacy Award: Ann McDaniel
  • Diana Viets Award: Angie Miller


  • Region 1: David Correia
  • Region 2: Meghan Parker
  • Region 3: Shelly Houser
  • Region 4: Jose Morales
  • Region 5: The Ability Center of Greater Toledo
  • Region 6: Julie Ross
  • Region 7: Chris Owens
  • Region 8: Josh Winkler
  • Region 9: Cindy Calderon
  • Region 10: Doug Toelle


Once again, we would like to thank all of our sponsors and exhibitors for making our conference possible year after year. Whether you’re a first time sponsor or you’ve been with us for years, there’s always something for all our sponsors and exhibitors at the NCIL conference. Every year, we find new and creative ways to highlight our sponsors, so make sure you’re on board for next year!

Soldier For Justice

  • Anthem
  • Centene


  • Verizon
  • Walmart


  • Uber


  • Waymo
  • WITH Foundation
  • PhRMA

Mover & Shaker

  • Motor Coach Industries
  • Center for Disability Rights


  • Molina Healthcare
  • Pride Mobility
  • Airbnb
  • Ability360
  • United Healthcare


  • Portlight Inclusive Disaster Strategies
  • National Coalition for Assistive and Rehab Technology
  • Mitsubishi Electric America Foundation
Top Sponsor Logos: Anthem, Centene Corporation, Verizon, and Walmart
Logos: Anthem, Centene Corporation, Verizon, and Walmart

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 [email protected], 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.

[Read more…]

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 [email protected] 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.

[Read more…]

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?

[Read more…]

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 [email protected]

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.

[Read more…]

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.

[Read more…]