the advocacy monitor

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

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.

[Read more…]

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.

ACL Investing $150 Million to Expand the Public Health Workforce to Respond to the Needs of People with Disabilities and Older Adults

Source: ACL

Today, the Biden-Harris Administration announced that the Administration for Community Living (ACL) will receive $150 million to increase the public health workforce’s disability and aging expertise and strengthen the collaboration with public health systems to support the health and safety of people with disabilities and older adults who are disproportionately affected during emergencies and disasters, such as the COVID-19 pandemic.

Public health promotes and protects the health of people and the communities where they live, learn, work, and play. The aging and disability networks funded by ACL play essential roles in that work. These networks are the nation’s visible and trusted infrastructure providing health and wellness education and information, counseling, case management, community services, and guidance related to health and social needs, as well as information on how to access those supports in every local community in the country.

“This funding will allow our national network of over 20,000 community-based organizations to further assist in efforts to combat the COVID-19 pandemic and bring help to communities that need it most,” said Alison Barkoff, ACL’s Acting Administrator and Assistant Secretary for Aging.

The funding will directly support wages and benefits for public health professionals within the disability and aging networks. These professionals provide a wide range of public health services and supports, including provision of culturally affirmative and linguistically accessible information, access assistance for vaccines and boosters, transition and diversion from high-risk congregate settings to community living, provision and connections to health and wellness programs, and activities that address social isolation and social determinants of health.

The networks and organizations eligible to receive public health workforce funding include:

  • Independent Living Centers
  • Independent Living Designated State Entities
  • No Wrong Door Systems/Aging and Disability Resource Centers
  • Paralysis and Limb Loss Resource Centers
  • Protection & Advocacy Systems
  • State Assistive Technology Programs
  • State Councils on Developmental Disabilities
  • State Health Insurance Assistance Programs
  • State Units on Aging/Area Agencies on Aging
  • Traumatic Brain Injury State Partnership Programs, and
  • Tribes and tribal organizations
  • University Centers for Excellence in Developmental Disabilities (UCEDDs)

“Our networks have a reach across states and into local communities across the county to assist people with disabilities and older adults who need support,” said Acting Administrator Barkoff. “These funds are part of our critical mission to support older adults and people with disabilities in their desire to live, work, and contribute to their communities and to make sure they have access to the supports they need during and after the pandemic.”

CVS Health Partners with Disability Community in Commitment to Affordable and Equitable Access to Health Care

Image: Logos: CVS Health, AAPD (American Association of People with Disabilities), Bazelon Center for Mental Health Law, DREDF, National Council on Independent Living

CVS Health, the American Association of People with Disabilities, the Bazelon Center for Mental Health Law, the Disability Rights Education and Defense Fund, and the National Council on Independent Living today announced that they are working together to seek policy solutions to protect equitable access to health care for all Americans and continue to protect the fundamental rights of people with disabilities.

“We have a long track record of supporting the essential and foundational legal protections for people with disabilities and ensuring that marginalized populations can access affordable health care and medicines in their community,” said David Casey, Senior Vice President, Workforce Strategies and Chief Diversity Officer at CVS Health. “Our agreement to pursue policy solutions in collaboration with the disability community will help protect access to affordable health plan programs that apply equally to all members. As a result, we will not pursue the matter further before the Supreme Court.”

“CVS Health engaged in an honest dialogue with disability community representatives and listened carefully to our concerns about what was at stake for disabled people with the question before the Supreme Court,” said Judith Heumann, a long time disability activist and leader featured in the popular documentary Crip Camp about the disability rights movement. Heumann and others, including disability law expert Chai Feldblum and the Bazelon Center’s Jennifer Mathis, took part in the discussions with CVS Health. “We look forward to continuing this important work in partnership and thank CVS Health for its commitment to preserving disability rights.”           

Maria Town, President and CEO of the American Association of People with Disabilities, stated, “Hard-fought progress has been preserved today through dialogue and partnership between advocates and CVS Health. We look forward to working collaboratively with CVS Health to find solutions that will ensure that health benefits are equally available and affordable to people with disabilities.”


About CVS Health

CVS Health is the leading health solutions company, delivering care like no one else can. We reach more people and improve the health of communities across America through our local presence, digital channels and our nearly 300,000 dedicated colleagues – including more than 40,000 physicians, pharmacists, nurses, and nurse practitioners. Wherever and whenever people need us, we help them with their health – whether that’s managing chronic diseases, staying compliant with their medications, or accessing affordable health and wellness services in the most convenient ways. We help people navigate the health care system – and their personal health care – by improving access, lowering costs and being a trusted partner for every meaningful moment of health. And we do it all with heart, each and every day. Learn more at

About the American Association of People with Disabilities (AAPD)

The American Association of People with Disabilities (AAPD) is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities. As a national cross-disability rights organization, AAPD advocates for full civil rights for the over 61 million Americans with disabilities by promoting equal opportunity, economic power, independent living, and political participation. To learn more, visit the AAPD website:

About the Bazelon Center for Mental Health Law 

The Bazelon Center for Mental Health Law is a national nonprofit legal advocacy organization that advances the rights of adults and children with mental disabilities through litigation, policy advocacy, public education, and technical assistance. Formerly the Mental Health Law Project, the Bazelon Center advocates for equal opportunity for people with disabilities in all aspects of life, including community living, health care, education, employment, housing, parental and family rights, voting, and other areas. The Center has played a role in numerous disability rights cases in the U.S. Supreme Court.

About the Disability Rights Education & Defense Fund (DREDF)

Disability Rights Education and Defense Fund based in Berkeley, California, is a national nonprofit law and policy center dedicated to protecting and advancing the civil and human rights of people with disabilities. Founded in 1979 by people with disabilities and parents of children with disabilities, DREDF remains board- and staff-led by members of the communities for whom we advocate. DREDF pursues its mission through education, advocacy and law reform efforts. DREDF is nationally recognized for its expertise in the interpretation of federal disability civil rights laws. DREDF has participated as amicus and as counsel for amici in many Supreme Court cases regarding these laws. 

About the National Council on Independent Living 

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 of people with disabilities and organizations including 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. NCIL’s mission is to advance independent living and the rights of people with disabilities. To learn more, visit

Media contacts:

Mike DeAngelis, CVS Health


Jess Davidson, AAPD


Jalyn Radziminski, Bazelon Center

Lawrence Carter-Long, DREDF

Eleanor Canter, NCIL