the advocacy monitor

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

Civil Rights & the ADA

Special Committee on Aging: Guardianships, Conservatorships, and Other Protective Arrangements

In the near future, the Senate Special Committee on Aging will be holding a hearing on guardianships, conservatorships, protective arrangements, and alternatives. The Committee is seeking input from the public in three areas:

  • Stories and examples of problems with guardianships,
  • Stories and examples of alternatives to guardianships,
  • Suggestions for protecting the rights of people being considered for or currently covered by guardianships, conservatorships, or other protective arrangements.

The purpose of collecting this information is to document the scope of problems related to protective arrangements and to identify potential solutions. The Committee cannot address individual problems or concerns with protective arrangements.

[Read more…]

NCIL Mourns the Loss of Bobby Silverstein

NCIL is saddened to learn of the passing of Robert “Bobby” Silverstein, J.D. on November 17, 2022 due to complications from cancer. Bobby leaves behind an enormous legacy because of his behind-the-scenes work to develop and pass the Americans with Disabilities Act and other laws that advance the rights of people with disabilities through his various roles in the U.S. House of Representatives and Senate.

Bobby’s “A Congressional Insider’s Guide to Influencing Disability Policy”, which includes “General Guidelines for Disability Policy Change Agents,” “Developing Organized Coalitions and Strategic Plans,” and “Effective Strategies for Inter-Acting with Policymakers,” are classics that have educated disability advocates on how to bring about systems change for over two decades.

Bobby was staff director and chief counsel for the Senate Disability Policy Subcommittee under former Senator Tom Harkin (D-IA).

“Bobby was as kind as he was brilliant,” said NCIL’s Interim Executive Director Darrell Jones. “He gave more to people with disabilities than we can ever totally thank him for.”

[Read more…]

NCIL Mourns the Loss of Lois Curtis

NCIL is saddened to learn of the passing of Lois Curtis. Lois passed away on Thursday, November 3, 2022.

Lois Curtis was the lead Plaintiff in the Supreme Court decision Olmstead v. L.C. She is an icon in the Independent Living and disability communities. Her fight to live in the community and outside an institution established one of the most important legal precedents for disabled people: the right to receive services in the most integrated setting appropriate to their needs. Since the 1999 decision, that precedent has led to a cascade of freedoms enjoyed by millions of disabled people in a variety of settings.

NCIL thanks Lois Curtis for her bravery and honors her massive contributions to our communities. She will be deeply missed and remembered always.

“It is so sad to learn of the passing of Lois Curtis. Lois Curtis and Elaine Wilson were the driving force behind the landmark Olmstead decision. They challenged the State of Georgia to provide their support services in the community and fought steadfast all the way through the U.S. Supreme Court. This week, please take a moment or two to reflect on their impact on our communities,” said NCIL Vice President Jeff Hughes.

Tributes and Memorials to Lois:

Funeral Arrangements:

A viewing will be held 9:00 a.m. – 8:00 p.m. on November 11 at Donald Trimble Funeral Home. A funeral will be at Donald Trimble Funeral Home at 12:00 p.m. on Saturday, November 12.

She will be laid to rest at the civil rights cemetery (South view Cemetery Association 1990 Jonesboro Rd. SE. / Atlanta, GA 30315). There will be a repass afterwards back at funeral home.

Please send any flower arrangements to:

Donald Trimble Funeral Home
1876 2nd Ave.
Decatur, Georgia 30032
Phone: (404) 371 -0772

So far over 500 people have donated over $22,000 to her final expenses. Make a donation at

Photo of Lois Curtis, a Black woman with dark skin and short Afro smiling joyfully as she sits in a room among friends. Photo courtesy of NPR.
Photo of Lois Curtis, a Black woman with dark skin and short Afro smiling joyfully as she sits in a room among friends. Photo courtesy of NPR.

Op-Ed: A Unified Cross-Disability Movement Fuels Needed Change

By Ronald Bassman PhD, NCIL Mental Health Subcommittee and Mindfreedom International

By way of introduction, I am a person who spent his 23rd birthday locked in a seclusion room of a mental hospital diagnosed with paranoid schizophrenia. Not responding to massive doses of Thorazine and Stelazine and considered hopeless, I became one of the last of the patients (prior to its being banned) to be subjected to insulin coma therapy along with electroshock. Five times a week for 8 weeks, I was strapped down and injected with enough insulin to put me into 40 comas. The “treatments” resulted in memory loss, blunted emotions, and an inability to concentrate enough to read. I was discharged and advised that I would have to take psychiatric drugs for the rest of my life and to abandon any hope of using my Master’s degree in psychology.

My story is long with twists and turns, so I will simply mention a few highlights. Despite all the dire predictions and the assault on my body and spirit, I did recover, return to university and became a licensed doctoral level psychologist. I have had no therapy nor taken any psychiatric drugs for more than 40 years. The more complete story can be found in the book I wrote, A Fight to Be: A Psychologist’s Experience from Both Sides of the Locked Door. Since my healing/transformation, I have devoted my life and work to changing a health care system that crushes the spirit and too easily and too often randomly violates the rights of those who are labelled “others.”

[Read more…]

Information Alert: Opportunity to Partner with VoteRiders

As the 2022 Midterm elections approach, it is important for voters to know what they need to be able to cast their ballot. Each state has different laws and requirements for what type of voter identification voters need to bring with them to the polls. 

VoteRiders is a nonpartisan, nonprofit organization that works to ensure that all citizens are able to exercise their freedom to vote. They inform and help citizens to get the voter ID that they need to bring to the polls. They also provide free services to direct service providers, such as Centers for Independent Living, to help their consumers get voter ID.

Recently, VoteRiders created a 2022 Partner Toolkit for organizations who are conducting nonpartisan voter registration and education efforts. It details the ways that VoteRiders can help in these nonpartisan voter engagement efforts.

Some of the services that VoteRiders provides:

  • Voter ID Assistance: VoteRiders provides voters with logistical, legal, and financial support to secure voter ID.
  • Voter ID Clinics and Virtual Voter ID Support: VoteRiders can host a Voter ID clinic or share their services and contact information with your consumers. They are able to provide voters with one-on-one assistance to obtain documents and ID.
  • Voter ID Helpline and Chatbot: Voters can call or text 844-338-8743 at any time to reach the VoteRiders Voter ID Helpline. The Voter ID Chatbot is available via SMS or Facebook Messenger. These resources can provide free help to voters on obtaining voter ID.
  • Voter ID Info Cards: VoteRiders has pocket-sized guides to allow voters to quickly reference their state’s voter ID rules. These cards are available in English and Spanish for all 50 states and Washington, DC. They are free to download, and VoteRiders prints and ships physical cards to registered 501(c)(3) nonprofits at no cost.

To learn about other services VoteRiders provides, and to join the VoteRiders Coalition, visit or email [email protected].

A Message from NCIL’s Diversity Committee

We as the NCIL Diversity Committee would like to assure to our membership that we understand and are committed to continuing our efforts to bringing intersectionality and diversity together. This will allow people who are not often seen or heard, because of underrepresentation, to have the opportunity to be at the table. This includes reaching out and connecting to the youth to hear what they have to say because their voices matter, and they are the future of this movement. The NCIL Diversity Committee is dedicated to the work that will not just benefit our organization but will benefit the disability community as a whole and future generations to come. 

[Read more…]

Free Webinar: Campaigning with a Disability

  • Monday, March 21 
  • 1:00-2:00 p.m. Eastern

We need more people with disabilities representing our communities in elected positions. But the process of running for an elected position can be inaccessible, intimidating, and unclear. Join this webinar to learn about the process of campaigning from people with disabilities who have done it!

This webinar is co-hosted by the REV UP Voting Campaign at the American Association of People with Disabilities and the National Council on Independent Living (NCIL). The webinar will include a presentation from Sarah Blahovec, Voting and Civic Engagement Director at NCIL.

This webinar will include ASL and live captioning. For additional accommodations or to request Spanish captions or audio, contact Lilian Aluri at [email protected] as soon as possible.

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 [email protected].

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…]

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…]