the advocacy monitor

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

CIL-NET Presents… A National Teleconference & Webinar: IL Partnership with Disability Advisory Councils, Boards, and Commissions

September 10, 2019; 3:00 – 4:30 p.m. Eastern

Presented by: Todd Holloway & Luke Byram

Register online or by using the printable registration form (PDF)

The Independent Living (IL) Movement is full of disability subject matter experts who make fantastic advisory council and commission members. Does your city or county have a disability or accessibility body to provide subject matter advice or direction? This webinar will cover positive outcomes and best practices as the result of being involved with your community at the advisory level.

[Read more…]

2020 Presidential Questionnaire on Disability Policies

Washington, D.C. –  The 2020 Presidential elections will have significant implications for 20 percent of the US population – people with disabilities. As we move towards Election Day, the American Association of People with Disabilities’ (AAPD) REV UP Campaign and the National Council on Independent Living (NCIL) have developed a Presidential Questionnaire on Disability Policies. Through their responses to this questionnaire, candidates will share their views and positions on key disability policy priorities.

“There will be over 35 million eligible voters with disabilities in 2020. We encourage all the Presidential candidates to engage the Disability vote,” said Maria Town, President & CEO of AAPD. “Our organizations are committed to empowering our community and speaking out about critical issues with the candidates.”

[Read more…]

Submit Comments by August 13 on Discriminatory Section 1557 Rollback

On June 14, 2019, the Trump Administration published a proposed regulation that would roll back the nondiscrimination protections under Section 1557 of the Affordable Care Act (ACA). Section 1557 is the provision of the ACA that prohibits discrimination in healthcare programs and activities on the basis of race, color, national origin, sex, age, or disability. The Administration’s proposal is extremely dangerous and discriminatory, and we need to do everything we can to stop this proposal from being finalized!

Specifically, the proposal would limit the number of health programs subject to Section 1557, and it would narrow the scope of the protections under Section 1557 in the following ways:

  • Gender identity and sex stereotyping would be completely eliminated from the definition of sex discrimination, the definition of gender identity would be eliminated, and all references to sexual orientation in HHS regulations would be erased. This could allow healthcare providers to deny transgender people gender-affirming care, and would result in queer and trans people being significantly less likely to get quality healthcare and more likely to face discrimination, abuse, or refusals of care.
  • Requirements for notices and taglines that let people with Limited English Proficiency (LEP) know about language access services, including services for disabled people, would no longer be required.
  • Healthcare providers would be able to refuse care and justify it under Title IX’s religious exemption. This would allow healthcare providers to discriminate against or deny abortions, reproductive health services, or other health services that a provider says violates their religious beliefs.
  • The ban on insurance plan discrimination on the basis of disability, age, and other factors would be removed, which would disproportionately impact people with disabilities and chronic illnesses. The removal of protections around benefit design would disproportionately impact people with HIV/AIDS and other disabilities and chronic illnesses that may be treated or managed with more expensive medications or other treatments.
  • The requirement for healthcare providers to share notices that inform people of their nondiscrimination policy, their rights, how to file complaints if they are discriminated against, and other information would be completely eliminated.
[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.

A Dialogue with Leaders in the Disability Community on Voting Accessibility and Security

By Patrick Leahy, Senior Advisor, Election Assistance Commission (EAC)

This past weekend on Sunday, July 21, just days ahead of the 29th anniversary of the Americans with Disabilities Act, the EAC’s four Commissioners met with members of the National Council on Independent Living (NCIL) for a pre-conference session on accessibility and security in the voting process. Commissioners also heard from attendees about a variety of other election access needs for voters with disabilities.

NCIL is a national cross-disability and grassroots organization representing thousands of individuals with disabilities and the independent living centers that serve them. The organization’s leaders and advocates came together during this segment to hear from EAC’s Chairwoman Christy McCormick, Vice Chair Benjamin Hovland, and Commissioners Thomas Hicks and Donald Palmer.

At the session, the Commissioners led a dialogue on the voting rights of people with disabilities and how to ensure security measures do not infringe on those rights. Commissioners met with more than 50 voters with disabilities and received invaluable feedback about their experiences and needs. As the Commission fulfills its responsibilities under the Help America Vote Act (HAVA), such outreach is critical to updating EAC tools and resources. This is why the EAC has made it a priority to lead interactive discussions at national conferences for people with disabilities for each of the past five years. Read more at

EAC Commissioners address the audience at NCIL's 2019 Annual Conference on Independent Living
EAC Commissioners address the audience at NCIL’s 2019 Annual Conference on Independent Living

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

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.

An Update About Taking Action During the Conference

Earlier this week, NCIL sent out an alert about taking action on the Hill after the NCIL March and Rally. In light of recent events, NCIL will no longer be participating in this action. NCIL still strongly supports the Disability Integration Act (DIA) and encourages you to talk with your members of Congress about it during your Hill Visits. As a reminder, you can read more about all of NCIL’s priorities to discuss with your members of Congress in our Legislative & Advocacy Priorities Booklet.

Legislative & Advocacy Policy Priorities: Summer 2019

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…]