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

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.”

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IL-NET T&TA Center for Independent Living in Partnership with the Administration for Community Living Presents a National Webinar – Being Invited In: Understanding and Respecting Native Disability Culture

November 29, 2022; 3:00 – 4:15 p.m. Eastern

Register online or reach out to for more information.

In honor of Native American Heritage month, this webinar will help participants gain an increased understanding of Native Americans with disabilities living in Indian Country and learn best practices for outreach and service delivery. Panelists from a multi-year ACL-funded Native American Independent Living Demonstration grant will share their experiences providing independent living services in Indian Country. They will discuss the following:

  • Key issues tribal communities are facing around disability;  
  • Barriers and best practices to collaboration;
  • Impacts to community-led efforts; and
  • How participants can partner to strengthen work with tribal communities.
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White House to Host Summit on COVID-19 Equity and What Works Showcase

The White House is hosting a Summit on COVID-19 Equity and What Works Showcase next week to highlight interventions and approaches that have moved the needle on equitable COVID-19 outcomes, and to showcase a path forward.

Please forward this invite widely for virtual participation via livestream!

You are invited to join the White House Summit on Covid-19 Equity and What Works Showcase virtually on Wednesday, November 16th, from 12:00 p.m. – 5:00 p.m. Eastern. Three Centers for Independent Living have been invited to be showcased!

RSVP for a link to the livestream of the Summit (12:00 – 3:00 p.m.) and to sign up for the virtual What Works Showcase (3:15 – 5:00 p.m.).

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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.

Know Your Resources – Orientation to the IL-NET National Training & Technical Assistance Center for CILs and SILCs

November 10, 2022; 3:00 – 4:30 p.m. Eastern

Register online

The IL-NET National Training & Technical Assistance (T&TA) Center, operated by ILRU in collaboration with NCIL, APRIL, and the University of Montana Rural Institute and RTC: Rural, supports Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs) in building capacity to run strong, effective organizations. The IL-NET’s resources cover an expansive list of topics related to CILs and SILCs, with an emphasis on core services. This webinar will highlight what’s new with the IL-NET and help you learn how to find the resources and training available through ILRU’s comprehensive website that best meet your needs. Our IL-NET team is here to assist you with finding the publications, recorded trainings, courses, and materials that will help you operate your CIL or SILC with excellence. 

Please join us for this complimentary webinar to learn what the IL-NET National T&TA Center has to offer you. Staff from ILRU will be joined by IL-NET collaborating organizations: NCIL, APRIL, and the University of Montana Rural Institute and RTC: Rural. The entire team will walk you through the trainings and resources the IL-NET offers and show you how you can best access them. You will learn about on-demand trainings and materials that are available immediately, as well as training topics for 2023 that you can add to your calendar. Don’t miss this free event! 

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NCIL Regional IL Showcase

The National Council on Independent Living presents a forum to meet NCIL’s Regional Representatives and learn what CIL and SILC peers are accomplishing.

November 9, 2022; 3:30 – 4:30 p.m. Eastern

Register online

NCIL is launching a recurring virtual forum in which NCIL’s 10 Regional Representatives will showcase the successes and accomplishments of CILs and SILCs in their regions. NCIL’s Regional Reps are members of NCIL’s Governing Board and are elected from among the NCIL members in their respective regions.  

This first forum features Regions I (Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont) and IV (Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee), but all regions are invited.

The forums are open to all NCIL members, all CILs and SILCs, and all IL associations.

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NCIL Presents: A Webinar Series on Racial Justice and Diversity, Equity, Accessibility, and Inclusion (DEAI)

The National Council on Independent Living (NCIL), with partial funding provided by Walmart, presents a series of webinars that are focused on definitions, attitudes, and behaviors of individuals and organizations committed to Diversity, Equity, Accessibility, and Inclusion.

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

DEAI: A Focus on CIL & SILC Boards and Leadership 

A Foundation on Racial Justice: Personal and Interpersonal Perspective

A Foundation on Racial Justice: The Organizational Perspective

Please register at the links above or for more information please reach out to

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NCIL Mourns the Loss of Paul Spooner

NCIL is incredibly saddened to learn that Paul Spooner, a disability rights champion for over four decades, passed away unexpectedly on Saturday, October 8, 2022.

Since the early 1990s Paul worked as the Executive Director of the MetroWest Center for Independent Living in Framingham, Massachusetts. Paul was a passionate advocate of the state’s PCA program and relentlessly advocated for his and other enrollees’ rights to control their personal care. Most recently, Paul celebrated the expansion of the Massachusetts CommonHealth program, a victory he was instrumental in achieving.

Paul served as President of the National Association of Independent Living in 1992. In 1993, he became NCIL Vice President and served as NCIL President from 1997-2001. He has remained actively involved in NCIL’s Rehabilitation Act / Independent Living Funding Subcommittee and advocacy activities.

“My fondest memory of Paul was during the 2000 Presidential Campaign. Paul had been meeting with Ted Kennedy to get Al Gore over to the NCIL Conference. The day that Gore came over to the hotel, everything was closed down, and once we were downstairs in the ballroom, no one could leave other than to the restroom.

“I was sitting next to the middle aisle at the back, and before long, here comes Paul leading Al Gore to the podium. From my recollection, Paul was wearing a crown, carrying a torch, and draped in a sheet just like the Statue of Liberty – holding Al Gore’s hand as they went down the aisle.

“Mind you, that was a long time ago, but that is what sticks out in my mind. Paul took a lot of teasing over that but he took it in stride and laughed right alongside of us.” – NCIL Vice President Jeff Hughes

He was involved in too many advocacy efforts to count. He lived fiercely and played a role in defining the Independent Living Movement. Our thoughts are with his partner Wini McGraw and our friends at the MetroWest Center for Independent Living. He will be deeply missed.

See also:

NCIL Mourns the Loss of Mary Margaret Moore

NCIL mourns the loss of our dear friend Mary Margaret Moore, who passed away early this morning, October 6, 2022. Our thoughts are with her wife Marcia and everyone who knew and loved her.

Mary Margaret was the former and long-time Executive Director of the Independent Living Center of the North Shore and Cape Ann (now Disability Resource Center) in Salem, Massachusetts.

She served on the NCIL Board of Directors for twelve years (2005-2017) as Region I Representative and Member At-Large. She also helped found and lead the NCIL Women’s Caucus and Aging & Disability Resource Center (ADRC) Subcommittee.

Mary Margaret was a champion of Independent Living and led with authenticity and love for her community. She left a lasting impression on everyone she came in contact with. Her personality was larger than life and she taught all of us about passion, love, joy, peace, and empowerment.

She was a peer and mentor to several generations in the Independent Living Movement. The example she set and the lessons she taught through her work will be remembered by those who had the privilege of knowing her.

“Mary Margaret was a remarkable woman and leader who contributed so much to Independent Living. She will be deeply missed,” said NCIL Interim Executive Director Darrell Lynn Jones.

On behalf of the board, staff, and membership, NCIL thanks Mary Margaret Moore for her significant contributions to our movement and our community, and for her friendship throughout the years.

We will post memorial information to NCIL’s Facebook page when it becomes available.

Mary Margaret Moore smiles brightly toward the camera at NCIL’s Annual Conference on Independent Living.
Mary Margaret Moore smiles brightly toward the camera at NCIL’s Annual Conference on Independent Living.

Give Aid to CILs and SILCs Affected by Disasters

As you have likely seen, Hurricane Season is in full effect. Centers for Independent Living, Statewide Independent Living Councils, and people with disabilities in Puerto Rico, Florida, and South Carolina have been significantly impacted by recent storms. CIL services are crucial to help people with disabilities regain independence after disasters. CILs provide needed housing assistance, help navigate changes to benefits that may occur, track down life-sustaining equipment, and cooperate and advocate with local, state, and federal agencies that arrive to provide emergency assistance, but so often fail to provide accommodations to people with disabilities. But CILs can’t help if their own facilities are damaged or destroyed or staff members are displaced or unable to work because of their losses.

In response to these and other types of emergencies, the National Council on Independent Living developed NCIL’s Disaster Relief Fund, which distributes money specifically to Centers for Independent Living or 501(c)(3) Statewide Independent Living Councils damaged or destroyed in disasters. NCIL does not distribute money to individual disaster victims, but rather, gives money to CILs and SILCs so that they can repair, replace, or rebuild facilities and equipment and assist their employees and communities in the wake of a disaster.

Since its inception in 2005, the Disaster Relief Fund has been funded by the generous support of NCIL members and friends like you. 100% of these restricted funds will go towards the purpose outlined above.

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