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

NCIL Mourns the Loss of Duane French

It is with great sadness that we inform you of the passing of a giant in the disability rights field, Duane French. Duane was a longtime member of the Independent Living community and a previous NCIL Board Member. Duane died on September 12, 2019 at 65 years old, from cancer.

Duane was a lifelong advocate who began empowering others early in his involvement with the disability community. Lou Ann Kibbee, NCIL’s Secretary and longtime friend said, “Duane was the first disability advocate I met in 1977 when I started at Emporia State University (ESU) in Kansas, not long after acquiring my own disability. He was the President of the Handicapped Students Association. Duane got me fired up when I listened to him about making changes on the campus. I soon became the Secretary of the student group. He got me started on the advocacy road to making a difference for other people. Not sure what road I would have taken if I had not spent that first year at ESU and met Duane.”

[Read more…]

Invitation: Virtual Roundtable Series on Involuntary Institutionalizations Before, During & After Disasters

The National Council on Disability (NCD) and the National Disability Rights Network (NDRN) invite you to join an upcoming Virtual Roundtable Series on Involuntary Institutionalizations Before, During & After Disasters / Emergencies.

This virtual roundtable series seeks input from representatives from Centers for Independent Living (CILs) and Protection & Advocacy (P&A) agencies on collaborative approaches that address involuntary institutionalizations throughout disasters. Inspired by the recently released NCD report, Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters, conversations will be focused on collective next steps for P&As and CILs.

[Read more…]

Candidates Respond to the NCIL / AAPD Questionnaire on Disability Politics

Tonight is the third Democratic presidential debate. Will you be tuning in? 

In August, NCIL and the American Association of People with Disabilities teamed up to release the 2020 Presidential Questionnaire on Disability Politics. The questionnaire covers a broad range of policies that are important to over 35 million eligible voters with disabilities.

Ahead of tonight’s debate, the following candidates have submitted responses:

AAPD will continue to post major party candidates’ responses, as well as track public statements on disability and when applicable, sponsorship of disability-related bills. You can find all of this information on their 2020 presidential election webpages. AAPD will post candidates’ responses on a rolling basis, and we will make sure to inform you when new information is available. 

[Read more…]

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 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

Disability Advocacy Groups File Amicus Brief Opposing the Administration’s Public Charge Rule as Illegal Disability Discrimination

The American Civil Liberties Union, Center for Public Representation, the National Council on Independent Living (NCIL), and fifteen other national disability advocacy groups represented by the global law firm Latham & Watkins filed an amicus brief (PDF) in support of litigation to stop the U.S. Department of Homeland Security (DHS) from implementing its new “public charge” rule. Twenty-one states, led by California, Washington, and New York, have filed cases against the Trump Administration to block the new rule. The advocacy groups – representing tens of thousands of people with disabilities and their families across the country – claim that the new public charge rule will prevent people with disabilities from entering this country or becoming legal residents in violation of federal disability law.

[Read more…]

Tell Your Members of Congress to Make Medical Deferred Action Permanent!

On August 7, 2019, the Administration abruptly decided to end consideration of non-military deferred action requests, commonly known as medical deferred action. With no warning, individuals began receiving letters from U.S. Customs and Immigration Services (USCIS) informing them that their pending applications and renewals for deferral had been denied, and they had 33 days to leave the country or risk deportation.

Medical deferred action allows immigrant children with life-threatening health conditions and disabilities (and their families) to stay in the U.S. for treatment. Medical deferment allows these children to receive government-funded healthcare, and allows their family members to work legally while their child receives medical treatment. Individuals approved for deferment are from countries where life-sustaining and life-saving treatments are not available, and therefore, they will not have access to proper treatment if they are deported.

[Read more…]

NCIL Mourns the Loss of Marca Bristo

To our NCIL family,

It is with a heavy heart that we write to inform you of the passing of Marca Bristo. Marca passed away on Sunday, September 8 from cancer. Until stepping down just recently because of her prognosis, Marca was President and CEO of Access Living, the Center for Independent Living she founded in Chicago, IL nearly 40 years ago. She co-founded NCIL in 1982 and served as our second President. Marca was a tireless activist who dedicated her life to fighting for disability rights, and the Independent Living community has lost an incredible advocate and friend.

Sarah Launderville, NCIL’s President and long-time friend of Marca described Marca as a force and a kindred spirit. Sarah said, “Marca was a trailblazing advocate. She had a very kind heart and built relationships, and she also had a sharp edge that got things done. She will be deeply missed, and my heart goes out to the IL community as we grieve this incredible loss.”

Marca was a staunch advocate for local, national, and international disability rights for over four decades. In addition to her roles with Access Living and NCIL, she served as the first disabled Chair of the National Council on Disability (NCD) from 1994-2002 and more recently as the President of the U.S. International Council on Disabilities. Her advocacy led to some of our community’s biggest achievements, including helping to author the Americans with Disabilities Act (ADA) and participating in negotiations for the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Marca has received numerous awards and honors for her disability rights work including: the Distinguished Service Award of the President of the United States in 1992; the Henry B. Betts Laureate in 1993; the 2007 Chicagoan of the Year by Chicago Magazine; being selected as a co-chair of Governor Pritzker’s Transition Committee on Human Rights; and just this summer, being awarded NCIL’s Max Starkloff Lifetime Achievement Award at the 2019 Annual NCIL Conference.

Kelly Buckland, NCIL’s Executive Director, said, “I will remember Marca for a lot of reasons, but the one that most often comes to mind was my first NCIL Conference in 1989. Marca was President of NCIL and led a March on the White House to get President George H.W. Bush to support the ADA. That led to a meeting between the NCIL leadership and the White House the next morning, and eventually led to White House support for the ADA. She was truly a great leader and I am honored that I got to know and work with her. The world is a better place because of her.”

Marca was in a league of her own. The Independent Living Movement has lost a passionate and visionary leader. She will be missed dearly, but her memory will certainly live on. And, as a previous Board Member and leader in the Independent Living movement, Marca’s picture will be added to the Wall of Fame in the NCIL office.

We would like to express our sincere condolences to Marca’s family and friends during this difficult time. A private funeral and burial will be held for Marca’s family. A public memorial service will be announced at a later date.

Read more about Marca in Access Living’s tribute.

Marca Bristo and Judy Heumann clasp hands and smile for a photo from the stage at the 2007 NCIL Annual Conference on Independent Living
Marca Bristo and Judy Heumann smile and pose for a photo from the stage at the NCIL Annual Conference 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.

NCIL Statement on Inspector General Report

On August 14, the U.S. Department of Health and Human Services (HHS) Office of Inspector General (OIG) released a report entitled “The Administration for Community Living Failed to Conduct Any of the Required Onsite Compliance Reviews of Independent Living Programs” (PDF). In the report, OIG found that the Administration for Community Living (ACL) has not conducted any of the onsite compliance reviews of Centers for Independent Living (CILs) or Independent Living Services – which are required by law – since they began oversight of the Independent Living (IL) Program in July 2014.

Since the IL Program transferred to ACL in 2014, we have been urging ACL to conduct these onsite compliance visits (and to provide written reports to CILs based on these visits). In fact, we also asked the Rehabilitation Services Administration to conduct onsite reviews when the IL Program was housed there. We have been asking for these reviews because it is our belief that in addition to being required under the law, these reviews are a critical part of ensuring the ongoing quality of the IL program.

The main goal of the IL program is to maximize the independence and the empowerment of people with disabilities over their own lives. The IL program is carried out primarily through the services of Centers for Independent Living (CILs), which provide these services to people with disabilities around the country. CILs are community-based, cross-disability, non-profit organizations that are designed and operated by people with disabilities. CILs operate according to a strict philosophy of consumer control, wherein they are directly governed and staffed by people with disabilities. The CIL network is doing incredible work around the country. Just a small amount of that work can be seen in our annual report.

While these reviews are indeed critical to the IL Program, the program is already operating on an inadequate budget and therefore ACL must not use existing program funding to conduct the reviews. The OIG report indicated that ACL did not allocate sufficient funds to support onsite compliance reviews. In ACL’s response, they indicated that funding has been a barrier to conducting these reviews. It is the responsibility of the HHS Secretary to ensure the Independent Living Administration has adequate funding to meet their requirements under the law – and to request increased appropriations if needed. Therefore, program dollars must not be taken to meet these requirements.

Again, NCIL is committed to ensuring that the IL network is as strong as possible. That includes not only meeting our requirements under the law (of which these reviews are an important piece), but also going beyond that to focus on continually improving our network through efforts like our Outcomes Measures Task Force and providing ongoing training and technical assistance opportunities. We reiterate our request and support for onsite compliance reviews with written reports, and we are ready and willing to work with ACL to move forward together.