Advocacy Monitor

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 

• November 2, 2022; 3:00 – 4:30 p.m. Eastern
• Register for DEAI: A Focus on CIL & SILC Boards and Leadership
• Target Audience: Governing Board Members, CEOs, Presidents, Executive Directors, Managers, and other Leadership of Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs)

A Foundation on Racial Justice: Personal and Interpersonal Perspective

• December 8, 2022; 3:00 – 4:30 p.m. Eastern
• Register for A Foundation on Racial Justice: Personal and Interpersonal Perspective
• Target Audience: Staff, members, consumers, people with disabilities, and others associated with CILs and SILCs

A Foundation on Racial Justice: The Organizational Perspective

• December 9, 2022; 2:00 – 3:30 p.m. Eastern
• Register for A Foundation on Racial Justice: The Organizational Perspective
• Target Audience: Staff, members, consumers, people with disabilities, and others associated with CILs and SILCs

Please register at the links above or for more information please reach out to jenny@ncil.org.

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:

• Mourning the Loss of Paul Spooner, ED of MetroWest CIL (Not Dead Yet)
• Memorial Information and Celebration Wall

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.

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.

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:

• You can add a personal story about what your CIL does or how your CIL has helped you!
• If leaving a voicemail or emailing, please leave your full street address and zip code. This will ensure your call or email is tallied.
• Read the IL Appropriations Background Sheet and view NCIL’s original request (https://bit.ly/3RZgo2J).

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.

This year, NCIL hosted our first hybrid conference, which included over 35 hours of content spread out over seven days.

In addition to onsite participation, the 2022 Annual Conference on Independent Living included livestreams, recordings, and virtual components. Virtual content will be available for all registrants through the end of 2022.

We had approximately 400 in-person participants and 300 virtual participants. First-time attendees comprised 55% according to evaluation data. Seventy-five percent of respondents evaluated the experience as good, very good, or excellent.

The excitement of reuniting as a community was on display throughout the event and we were thrilled to see so many new faces.

NCIL thanks our dedicated members, volunteers, staff and board members, presenters, speakers, exhibitors, advertisers, and all conference participants for creating a truly memorable conference experience.

We are especially thankful for the members who scheduled and met with elected officials to advocate for Independent Living priorities. Together, we will create a world in which people with disabilities are truly valued equally and participate fully.

• Read the full conference wrap-up, which includes photos, awards, election results, and a special thank you to our sponsors.

August 23, 2022; 3:00 – 4:30 p.m. Eastern

Register online or reach out to jenny@ncil.org for more information.

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 CILs and SILCs in building capacity to run strong, effective organizations. This webinar will be a discussion highlighting the importance of monitoring and assessing a CIL’s performance using self-assessment tools and how these tools can best be utilized within a CIL to improve program performance. It will feature three speakers, Paula McElwee from Independent Living Research Utilization (ILRU), Annetta Johnson from Northern West Virginia Center for Independent Living, and Kyle Kleist from Center for Independent Living for Western Wisconsin.

Please join us for this complimentary webinar and learn more about use of self and peer monitoring as management tools within CILs.