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

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


Save the Date: SILC Congress in San Diego!

May 16-18, 2022

Holiday Inn Bayside

“Pandemic to Possibilities: SILC Solutions”

Early Bird (December 15, 2021-February 14, 2022)

  • Member-$350
  • Non-member-$450

Regular (February 15, 2022-March 30, 2022)

  • Member $400
  • Non-member-$500

Late (April 1-2022-April 25, 2022)

  • Member $450
  • Non-member-$550

Meal Ticket for Spouse / PCA

  • Member-$200
  • Non-member-$200

Registration Link will open on December 15th, 2021 at!

The first 25 to register with payment during the early bird will receive 6 free tickets (6 for $5) for the 50/50 raffle.

Room Rate will be $155 through April 15th, 2022.

  • State Baskets!
  • 50/50 Raffle!
  • Informative General Sessions!
  • State Sharing!

Bipartisan Infrastructure Bill to be Signed into Law

Friday night, the House passed the Infrastructure Investment and Jobs Act, the bipartisan infrastructure package that passed the Senate in August. President Biden is expected to sign the bill soon.

The package includes $1.2 trillion in investments into the country’s infrastructure, including transportation, internet, and utilities. Some of the key items included and funded in the bill include: repairs to roads, bridges, and other infrastructure; clean water access; broadband internet, including efforts to close the digital divide; efforts to tackle climate change; public transit modernization; electric vehicles; grants to improve legacy passenger rail accessibility (a version of the All Station Accessibility Program (ASAP) Act); and Amtrak accessibility improvements, including the addition of a disabled person on the Amtrak Board of Directors. You can find more details in the White House fact sheet.

This package represents a historic investment in our country’s infrastructure. It will improve transportation, address climate change, reduce inequities, and create jobs. It is, however, important to note that the infrastructure bill did not pass together with the Build Back Better Act. (Read more about the Build Back Better Act.) While these were separated into two packages early on, alone they make up only part of the President’s legislative agenda.

The House did not vote on the Build Back Better Act. They did take a procedural vote that will allow the final vote to happen. A Congressional Budget Office (CBO) score on the bill is expected this week. It is expected the House will vote on the Build Back Better Act when they return from recess during the week of November 15. It will then move to the Senate, where Senate Majority Leader Schumer has said he hopes to pass the package before Thanksgiving. In the meantime, keep calling your Members of Congress to ensure it gets over the finish line! Check out our previous alert for more information.

NCIL Statement on its Ongoing Commitment to Racial Equity

In the days following the state murder of George Floyd, organizations across the world issued statements. Statements were their way to show they cared about the issue of police violence. They were statements of solidarity. Statements of sympathy. Statements of support. By May of 2020, the National Council on Independent Living (NCIL) had been working on racial equity issues for a year. The board started their work with an equity and inclusion consultant in October 2019. In June 2020, the NCIL Board issued our own statement. The NCIL statement was a commitment to continuing the work of examining our own operations at all levels to incorporate anti-racism into our advocacy. NCIL also committed to lead in including racial equity into disability advocacy.

Just a year after this commitment, the NCIL board hired Reyma McCoy McDeid. Reyma is the first disabled Black woman to lead a national disability-run organization. The decision to hire her should not have been surprising. Reyma brings impressive credentials to the position. Reyma has a history of effective work in disability service and advocacy spaces. What the board did not appreciate, even with the racial equity work that had been undertaken, was how the organization would be required to confront implicit bias as our members, our partners, and the larger community interacted with NCIL under the leadership of a Black woman.

NCIL is no stranger to the struggle in addressing structural bias. Indeed, challenging ableism has demanded a dogged commitment, holding friends, allies, providers, and opponents accountable for removing barriers and addressing outdated thinking about disabilities and people with disabilities. It has meant challenging others’ unconscious bias. Unconscious bias is when he hold beliefs that we do not realize make up part of our thinking. It is important to challenge unconscious bias because that thinking limits our potential as much as physical barriers in the environment does.

NCIL has made the commitment to challenge our own bias, unconscious and otherwise, when it comes to issues related to race. NCIL has committed to bringing the energy and intensity we have used to move disability rights forward to create accountability inside and outside our movement for the ways that Black and brown people of color are perceived, treated, and excluded. We will no more allow people to accuse the organization or the leadership of the organization of “playing the race card” than we have allowed others to accuse us of using our disabilities to get “special treatment.”

NCIL is pleased to be joined in the commitment to disability justice by allies in the movement. The willingness of partner organizations to take up this work has been encouraging.

Centene shares in NCIL’s commitment to disability justice. Centene recognizes that our nationwide network of members is critically impacted as structural bias based on disability, race, gender identity or sexual orientation ties directly to health and well-being. We appreciate the leadership NCIL is showing by embracing equity in all its forms.

– Rick Fredrickson, Centene Corporation, St. Louis, Missouri

CILs around the country have embraced NCIL’s leadership in advancing the conversation and supporting the work of promoting equity in all areas.

NCIL’s courage in calling out racial bias in disability spaces has placed it apart from other organizations. With Reyma McCoy McDeid’s leadership, the disability rights movement is progressing with a vision of inclusion and equity for all members of our community, and an unrelenting demand to deliver the potential of a generation of work to the most marginalized members of our community.

– Shari Coatney, SKIL Resource Center, Parsons, Kansas

The investment in the long-term sustainability from disability leaders with a history in the organization has been greatly appreciated.

As seasoned NCIL leader, I was pleased to have the opportunity to talk with Reyma early in her tenure as Executive Director of NCIL. Her straightforward approach and vision for NCIL’s movement towards a justice-oriented framework represents a culture change for the organization. A needed change for the evolution and continuation of our fight for disability rights for generations to come.

– Ann McDaniel, West Virginia Statewide Independent Living Council

NCIL staff have joined in on the work needed to create cultural change for the organization.

As NCIL approaches our 40th anniversary, we are poised for a shift towards intersectional disability justice – an approach that opposes broad systems of oppression and marginalization in our pursuit of justice for disabled people. NCIL staff eagerly support this shift and feel that it is imperative for the continued success and longevity of the organization. We encourage other disability organizations to join us in this work.

– Tim Fuchs, Director of Operations, National Council on Independent Living

Diversity is not enough. A commitment to diversity alone does not support people in positions where the outside environment continues to discriminate, including members within the organization or past leaders of the organization. The NCIL Board is committed to promoting equity and inclusion, through leadership in the organization and by demanding accountability and change where bias in all its forms happens.

We are thankful for the leaders in the disability rights movement who have joined us in welcoming Reyma to her position and supporting the organization’s shift towards disability justice work. We look forward to shared growth in this commitment with existing partners, and to developing new partnerships with people, groups, and allies who share a vision of a society without barriers for anyone.

Take Action: CVS is Trying to Gut Disability Rights – Tell Them to Back Down!

CVS claims a strong commitment to the disability community. Earlier this year they put out a statement honoring the 31st anniversary of the Americans with Disabilities Act (ADA) and boasting their commitment to ensuring health care is accessible. Yet this December, the US Supreme Court will hear arguments in CVS v. Doe, in which CVS is fighting to gut the protections of disabled people across the country. We need to take action and tell CVS to pull this case from the Supreme Court today!

More about CVS v. Doe

CVS v. Doe is a case brought by HIV-positive people (the “plaintiffs”) against CVS. CVS requires the plaintiffs, who have pharmacy insurance coverage through CVS, to use a specialty medication program. The plaintiffs want CVS to allow them to opt out of the program because they are having problems getting their medications and the information they need from qualified pharmacists.

CVS is arguing their program is lawful and that Section 504 of the Rehabilitation Act – a law that prohibits discrimination on the basis of disability – does not cover situations where discrimination is unintentional. But the disability community knows all too well that not all discrimination is intentional. Many policies that seem neutral can harm or exclude people with disabilities – this type of discrimination is often referred to as “disparate impact”. CVS is arguing that Section 504 does not cover disparate impact discrimination.

[Read more…]

Using Technology to Advance Intersectionality: A Fireside Chat with the National Council on Independent Living

Verizon and the National Council on Independent Living (NCIL) invite you to join a fireside chat looking at the new opportunities virtual platforms and social media that have created for historically overlooked leaders, particularly those in the disability space and other intersections of marginalization.

This webinar has been rescheduled:

  • Wednesday, November 10, 2021
  • 2:00-3:00 p.m. Eastern Time
  • RSVP online

ASL interpreters and captioning will be provided.


  • Lydia X.Z. Brown (they/them), Policy Counsel, Privacy and Data Project, Center for Democracy & Technology


  • Reyma McCoy McDeid (she/her), Executive Director, National Council on Independent Living
  • Cara Liebowitz (she/her), Engagement Associate, National Council on Independent Living
  • Zachary Bastian (he/him), Manager, Strategic Alliances, Verizon
Using Technology to Advance Intersectionality Speaker Profile Images
Using Technology to Advance Intersectionality Speaker Profile Images

NCIL Statement on Section 1557 of the Affordable Care Act

On November 1st, 2021, the National Council on Independent Living (NCIL) was invited to participate in a listening session hosted by the US Department of Health and Human Services (HHS), as well as the US Office of Civil Rights (OCR). The purpose of the listening session was to present organizations like NCIL, as well as the National Disability Rights Network (NDRN), United Spinal Association, and Bazelon Center for Mental Health Law with an opportunity to make comments pertaining to Section 1557 of the Affordable Care Act. NCIL’s statement at this listening session is as follows:

“Thank you for the opportunity to participate in this listening session on Section 1557 of the Affordable Care Act. The National Council on Independent Living is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Our member organizations include hundreds of the disability-run Centers for Independent Living and Statewide Independent Living Councils located all across the country providing direct services, advocacy, and support for disabled and aging people in meeting their goals for independent living.

The Affordable Care Act presented a landmark opportunity to offer equal and comprehensive health insurance coverage that included all Americans, including people with disabilities of all ages. Among the specific provisions of the ACA which made a profound difference for disabled Americans, were anti-discrimination and equity provisions that made coverage affordable, covered pre-existing conditions, offered essential benefits, and prohibited benefit limitation on the basis of health status or disability. The ACA explicitly outlawed these longstanding discriminatory policies, and Section 1557 was key in enforcing these reforms. Section 1557 offers anti-discrimination protections, providing a mechanism for addressing discrimination on the basis of protected status, including disability.

[Read more…]

Funding Options for Transition and Diversion During COVID-19: A Fact Sheet for CILs

NCIL is happy to announce the release of our new Fact Sheet for CILs, Funding Options for Transition and Diversion During COVID-19.

The Fact Sheet is written in plain language and available in several formats.

About the Fact Sheet

COVID-19 has hurt disabled people. Centers for Independent Living (CILs) have been trying to help disabled people survive during the pandemic. CILs have been helping disabled people leave institutions and move to their own homes. Helping disabled people leave institutions is called transition. CILs have also helped people to stay in their homes with the support they need. Helping people stay in their own homes is called diversion.

Some federal programs have made money available to support this work of CILs. There are many different ways CILs can get money from the federal government to work with disabled people during the pandemic. This fact sheet talks about these options. It also talks about how CILs can use this money. All the options give CILs money to support disabled and aging people in the community. CILs can use this money to move people out of institutions and support people in their own homes.

The Fact Sheet is about five different funding sources:

  • CARES Act money
  • Category B money
  • No Wrong Door money
  • Changes to Medicaid funding
  • Money Follows the Person money

Build Back Better Act Package Includes HCBS Funding: Take Action to Get It Over the Finish Line!

Last week, the White House released a framework to advance the Build Back Better plan into law. The House Rules Committee then released their Build Back Better Act text. While negotiations for the final package are ongoing, the package is expected to have the support of all 50 Democratic Senators, which will be necessary to pass using the budget reconciliation process. Read more about reconciliation in our previous alert.

The Build Back Better Act as introduced includes $1.75 trillion in important 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. It would also make the Money Follows the Person program and HCBS Spousal Impoverishment protections permanent. Right now, the package does not include several previously considered provisions, including lowering prescription drug costs or paid family and medical leave.

Importantly, the package includes $150 billion to strengthen Medicaid home and community based services (HCBS), which includes efforts to end the existing backlog and improve conditions for workers. $150 billion is less than the amounts promised in President Biden’s American Jobs Plan and passed out of the House Energy & Commerce Committee. It is not enough to meet the incredible need. That said, $150 billion would be the most significant investment in HCBS we have ever seen. It would provide critical, urgently-needed funding to help disabled people live in our communities with the services and supports we need.

Congress will be working hard in the coming weeks to get the final package over the finish line. This is not a done deal yet! It is critical that our Members of Congress keep hearing from their constituents about the things that matter most. In particular, it is important they hear how vital it is that HCBS funding remain in the package until the bill passes!

Take Action!

Contact your Senators and Representative today! Make sure they know how critical home and community based services (HCBS) are, and ask them to make sure HCBS funding stays in the package until the end!

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

[Read more…]

Join the Department of Transportation for Public Meetings on the Justice40 Initiative!

On January 27, President Biden signed an Executive Order (EO) on combatting climate change. The EO also announced the creation of the Justice40 Initiative (“Justice40”).

The goal of Justice40 is to work toward equity for communities that have been marginalized. Many of these communities have been harmed by underinvestment in important programs and services. These include transportation, housing, water, healthcare, and more. Justice40 will try to fix this. Justice40 will direct 40% of federal investments in covered programs to disadvantaged communities. Interim guidance with recommendations has been released.

The US Department of Transportation (USDOT) is working to developing their approach to Justice40. To start things off, they will host two virtual meetings. These meetings are open to the public. People who join the meetings will hear from USDOT leaders. People can also provide input. Please see below for information and to decide which session(s) to attend.

Read more about the DOT’s Justice40 efforts. If you have questions about the meetings or Justice40, contact

[Read more…]