the advocacy monitor

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

NCIL Goes Fully Virtual!

Like many organizations, when NCIL went remote in March 2020, we had to adapt very quickly. While we missed the social and practical benefits of a physical office, it became apparent that our productivity wasn’t diminished by working remotely. We could still get the work done – and we did. We’ve hosted two virtual conferences, transitioned previously on-location trainings to webinars, and made countless gains in our policy work. In addition, we found that remote work was much more accessible for many of our staff.

Going virtual made financial and logistical sense. So, as of today, we are pleased to announce that our office is now fully remote. Our business phone numbers are still active, and you can reach us by the same phone numbers as always. Our new mailing address is as follows:

National Council on Independent Living
PO Box 31260
Washington, DC 20030

We look forward to continuing our work and the future we will create together.

Announcing NCIL’s Home Modifications Fact Sheet for CILs

Presented by NCIL and the KU RTC/PICL

NCIL is excited to announce the Home Mods Fact Sheet. This fact sheet is intended to support CILs looking to create or expand a home modification program. NCIL would like to thank the team at PICL (Promoting Interventions for Community Living) at the University of Kansas, as well as our featured CILs: PILR in Placer, CA; The Ability Center of Greater Toledo; and accessABILITY in Indianapolis for their support and guidance.

Home modifications or “home mods” are changes a person makes to make their home accessible to them. Home mods can be as simple as a small threshold ramp to get through a doorway or as major as a full renovation. Some of the most common home modifications are ramps, improvements to doorways and entrances, and bathroom modifications.

A lot of Centers for Independent Living (CILs) operate home modification programs to help people make their homes more accessible. In a 2021 NCIL / RTC/PICL survey on home mod programs, 70% of CILs reported operating a formal home mod program. Some CILs help recommend improvements, others help with minor home mods, and some CILs assist with everything from recommendations, planning, and construction.

This fact sheet will share resources for your CIL, along with promising practices and real world examples from several CILs with successful home modification programs: accessABILITY in Indianapolis, Indiana; The Ability Center of Greater Toledo in Ohio; and Placer Independent Living Resource Services (PIRS) in Auburn, California.

Join U.S. DOT to Hear Updates from the Inclusive Design Challenge Semifinalists

A message from the Department of Transportation

On Monday, January 24 and Wednesday, January 26, the U.S. Department of Transportation (DOT) will host two virtual workshops highlighting the ten Semifinalists for DOT’s Inclusive Design Challenge. The Challenge aims to generate solutions to enable people with physical, sensory, and cognitive disabilities to use automated vehicles to access jobs, healthcare, and other critical destinations.

Please join us to learn about the designs and progress and offer real-time feedback. Five teams will present in each session; advanced registration is required.

Session 1 (Register for Session 1)

Monday, January 24, 2022

11:30 a.m. to 1:00 p.m. Eastern

Session 2 (Register for Session 2)

Wednesday, January 26, 2022

1:30 p.m. to 3:00 p.m. Eastern

Learn more about the Inclusive Design Challenge by visiting the website and stay engaged by signing up for email alerts.

New NCIL Program Announcement: Welcome to next.!

As many of you may have heard, over the past few months, NCIL has been working towards a new intersectional and intergenerational program aimed at uniting the disability world. Today, we are officially announcing our latest program, next.

The goal of next. is to bring together the disability justice movement and achieve change faster as one unit. We want the ADA Generation to learn from those who came before and the tactics they used to accomplish their advocacy. But we also want to bring the younger perspectives and knowledge into the playing field and lift the disability justice movement into the modern era.

This program will be entirely virtual, and over the course of the next few years, we will be building an intersectional platform that represents ALL people with disabilities.

It’s time everyone. Let’s unite and create a strong disability justice movement so that the next. generation has full justice in the US.

You can follow along with next. at or via NCIL’s social media. As stated above, if you are interested in taking part in a campaign or network building, please reach out to me directly at

next. logo: Connecting the next generation of disability advocates.

Looking forward to the future!

Jenny Sichel, next. Program Coordinator

Keep Taking Action to Pass the Build Back Better Act; Join a Grassroots Virtual Rally with Senator Casey and Congresswomen Dingell!

The House passed the Build Back Better Act (BBB) last month. BBB is a federal funding plan to support rebuilding many national programs that have been long neglected. We are still waiting for the Senate to pass the bill. While Senate Majority Leader Schumer has set a Christmas deadline – and a vote next week is possible – the timeline is still unclear. Passing BBB is not a done deal. Our Senators need to keep hearing from us!

The $1.7 trillion of investments included in the Build Back Better Act are critically needed. BBB has $150 billion in funding for Home and Community Based Services (HCBS) and our workers. In addition to the HCBS investments, BBB:

  • makes the Money Follows the Person program and HCBS Spousal Impoverishment protections permanent;
  • includes funding for housing, education, clean energy and sustainability, immigration reform, and health coverage;
  • includes efforts to transition to competitive integrated employment;
  • closes the Medicaid coverage gap;
  • expands Medicare to cover hearing benefits;
  • reduces healthcare premiums;
  • extends important tax credits;
  • reduces drug prices;
  • establishes a paid family and medical leave program; and
  • invests in broadband Internet services nationwide.

You can see more about what’s included in the Build Back Better act in this framework and in the resources below. These are crucial services and programs that are needed now. We cannot keep waiting!

Take Action!

The Senate must keep BBB intact and pass it quickly. It is critical that our Senators keep hearing from us about how important this is. Call or email your state’s Senators about the things that matter most to you! Tell them their disabled constituents cannot keep waiting!

More information is below, including how to contact them and a sample script.

[Read more…]

Justice Department Sues Uber for Overcharging People with Disabilities

The US Department of Justice has filed a lawsuit against Uber Technologies Inc. (Uber) for charging people with disabilities wait time fees if they took longer to enter an Uber vehicle due to their disability. Please read the Justice Department’s press release on the lawsuit to learn more. Please share this notice with your network and take action if you were charged wait time fees.

From the press release:

If you believe you have been a victim of disability discrimination by Uber because you, or someone you were traveling with, were charged wait time fees, please contact 833-591-0425 (toll-free), 202-305-6786, or send an email to For more information on the ADA, please call the department’s toll-free ADA Information Line at 1-800-514-0301 (TDD 800-514-0383) or visit For more information on the Civil Rights Division, please visit

House Passes Build Back Better Act; Take Action to Get It Over the Finish Line!

Today the House passed the Build Back Better Act (BBB), President Biden’s transformational legislation with a historic $1.7 trillion investment in critical programs and services. While the COVID-19 pandemic is ongoing, BBB and the recently-passed infrastructure package will set our country on a path toward a more equitable recovery.

The Build Back Better Act includes major investments in housing, education, children and families, clean energy and sustainability, immigration reform, and health coverage. It would fund grants to transition to competitive integrated employment, close the Medicaid coverage gap, expand Medicare to cover hearing benefits, reduce healthcare premiums for millions of people, and extend important tax credits. The bill also includes paid leave and drug pricing provisions that had previously been removed from the package.

Importantly, the package still includes $150 billion in funding to strengthen Medicaid home and community based services (HCBS). While $150 billion is less than the original amount proposed by President Biden, it is still the largest investment in HCBS we have ever seen and would provide urgently-needed funding to support the workforce and help disabled people live and stay in our communities. The package would also make the Money Follows the Person program and HCBS Spousal Impoverishment protections permanent, further enabling disabled people to get out of institutions and live in the community.

BBB now moves to the Senate, where Senate Majority Leader Schumer has set a Christmas deadline. This is not a done deal yet!

Take Action!

It is critical that the Senate keep BBB intact and pass it quickly. Keep contacting your Senators; they must keep hearing from their constituents about the things that matter most, especially how vital it is that HCBS funding remain in the package until the end!

More information is below, including how to contact them and a sample script.

[Read more…]

IL-NET T&TA Center Presents… A National Webinar – Coordinating Accessible & Engaging Virtual Events for CILs and SILCs: A Panel Discussion of Promising Practices

December 8, 2021; 3:00 – 4:30 p.m. Eastern

Register online

We are all adapting to the virtual environment. So much of our work is done virtually now that we hardly have a choice. But, we must do everything possible to ensure that our virtual spaces are as accessible as possible. Join us in December for a panel discussion of promising practices from the IL-NET team including APRIL, ILRU, and NCIL to make your virtual events accessible and engaging. We will share specific tips, features, and accommodations, along with a broader discussion of ideas and resources to consider for your meetings and events.

Registration Fee: This event is free-of-charge.

Target Audience: Executive directors, program managers, and staff members of Centers for Independent Living

[Read more…]

FEMA Civil Rights Summit – 2.0 Equity

FEMA’s Office of Equal Rights invites you to save the date for our upcoming Civil Rights Summit – 2.0 Equity. This event is designed to foster dialogue and partnerships through direct engagement with FEMA. Presentations and discussion will cover FEMA programs and services, with special emphasis on improving equity in emergency management. NCIL Executive Director Reyma McCoy McDeid will be a panelist.

FEMA’s Civil Rights Summit

Please register in advance for these events so we may keep you informed as additional information becomes available.

This event will be presented in English and translated into Spanish, with captioning and Sign Language Interpretation provided for each. If you require alternative formats or other accommodations because of a disability, please contact FEMA’s External Civil Rights Resource Line at 833-285-7448 (833-CVL-RGHT) or email us your request at

We welcome you to share this announcement broadly with your networks. Thank you for your partnership!

Separa la Fecha: Cumbre de Derechos Civiles de FEMA– 2.0 Equidad

La Oficina de Igualdad de Derechos de FEMA los invita a que separen la fecha para la próxima Cumbre de Derechos Civiles ­ ­̶ 2.0 Equidad. Este evento está diseñado para promover el diálogo y la colaboración mediante una interacción directa con FEMA. Las presentaciones y las discusiones incluirán los programas y servicios de FEMA, con un énfasis especial en mejorar la equidad en el manejo de emergencias. La directora ejecutiva de NCIL, Reyma McCoy McDeid, será una panelista.

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Care Rationing Forum: Tuesday, November 16

With blue and brown colors, a graphic shows a line of coughing people entering a hospital, with a masked health care provider holding a clipboard with a question mark on it. Graphic text is available in this article.

Please join us for a Care Rationing Forum. We’ll discuss the impact of COVID care rationing on older people, disabled people, and people of color, and brainstorm how disability advocates around the country can take action.

Tuesday, November 16

  • 1:00 – 2:30 p.m. EST
  • 12:00 – 1:30 p.m. CST
  • 11:00 a.m. – 12:30 p.m. MST
  • 10:00 – 11:30 a.m. PST

Sign up at


  • Reyma McCoy McDeid, National Council on Independent Living
  • Mel Leviton, Idaho State Independent Living Council;
  • Silvia Yee, Disability Rights Education & Defense Fund (DREDF)

Event will include live captioning, ASL and Spanish interpretation. Please make a note of other needed languages or accommodations on the registration form.

This event is part of the Disability Organizers Forum, a project of the National Disability Leadership Alliance. Co-sponsored by Senior & Disability Action.

#DontRationOurCare #NoBodyIsDisposable #EndAbleism #EndAgeism

Please share widely.