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

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 www.gofundme.com/f/final-expenses-for-the-lovely-lois.

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 jenny@ncil.org.

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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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Action Alert: Ask Congress to Support Centers for Independent Living!

Help People with Disabilities Live Independently!

Congress is reconciling the Fiscal Year 2023 appropriation requests from the House and Senate. Funding for Independent Living has been recommended at these levels:

  • Senate appropriation – $127 million
  • House of Representatives appropriation – $140 million

We are asking the Senate and House Appropriation Committees to support the House number of $140 million.

  • Call your Senators and Representative: Call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY). Ask to be connected to your Senators or Representative.
  • You can find your Senators’ phone numbers and websites at senate.gov and your Representative’s phone number and website at house.gov/representatives. If you don’t know who your Representative is, you can find out at house.gov/representatives/find-your-representative.
  • You can use Resistbot to turn texts into faxes, mail, or hand-delivered letters by texting “RESIST” to 50409.

Sample Script (please feel free to personalize):

Hi, my name is [YOUR FULL NAME], and I’m from [CITY, STATE].

I am [calling / writing] to urge Congress to reaffirm its commitment to 61 million disabled Americans by increasing funding for the Independent Living Program and accepting the House of Representative’s appropriations request of $140 million dollars in the Departments of Labor, Health, and Human Services, And Education, And Related Agencies Appropriations Bill, 2023. We are asking for the $140 million because there is an increasing need for services from Centers for Independent Living, which are cross-disability, non-residential, community-based, nonprofit organizations run by and for people with all types of disabilities.

Centers for Independent Living help people live independently in their communities by providing a variety of services, including helping people to get out of nursing homes!

I hope you will support your disabled constituents and accept the higher number requested by the House of Representatives of $140 million for the Independent Living Program for FY 2023.

Thank you for your time.

[Your name]

Tips:

Recruiting CIL Staff for Innovative Pilot Training Program

Prepare to empower people with disabilities in making health insurance choices!

The American Association on Health and Disability (AAHD) and our partners, ILRU IL NET T&TA Center for Independent Living, National Council on Independent Living (NCIL), and the Association of Programs for Rural Independent Living (APRIL), are recruiting CIL Staff volunteers to pilot a training curriculum that teaches CIL Staff how to assist people with disabilities in making health insurance choices.

The training will be open from November 1 to December 31, 2022. This training will be conducted using the Course Avenue platform that will provide participants with learning modules and evaluation surveys at their own learning pace.

There are 4 Modules in the training curriculum – Introduction to Health Insurance, Types of Health Insurance, Choosing Health Insurance, and Hurdles to Using Health Insurance.

The purpose of this pilot is to get YOUR feedback on the training’s effectiveness at preparing CIL Staff to assist people with disabilities choose and use health insurance.

[Read more…]