the advocacy monitor

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

2022 NCIL Advocacy Priorities Guide Now Available!

NCIL’s 2022 Advocacy Priorities Guide is now available.

This document contains specific information on the national legislative and policy priorities identified biannually by the NCIL membership, including funding for the Independent Living Program, healthcare and long-term care, housing, transportation, education, and more.

Please share this document with your Center or SILC staff, board, and the Senators and Representatives who serve your districts.

Contact NCIL for further information on the issues discussed in this document.

2022 NCIL Youth Scholarship Applications Now Open!

NCIL is proud to announce the 2022 Youth Scholarship Fund. For the eighth year in a row, we will be offering scholarships to our Annual Conference for youth with disabilities ages 18 – 26 who may otherwise be unable to afford the cost of attendance. 

For the fourth year in a row, we are also offering the Emet Tauber Youth Scholarship. Emet Tauber was a former Youth Scholarship recipient and NCIL board member who passed away in 2019. Emet’s life was changed by the Youth Scholarship Fund and he was passionate about enabling others to have the same opportunities. Therefore, the Emet Tauber Youth Scholarship will be awarded each year to at least one youth with a disability who is also trans and / or Jewish in recognition of Emet’s activism within both of those communities. If you would like to be considered for the Emet Tauber Youth Scholarship, follow the prompts on the application form under the “Emet Tauber Youth Scholarship” section.

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Participants Needed: 2022 National Survey on Health and Disability (NSHD)

Share how access to health care and the COVID-19 pandemic have affected your life.

The University of Kansas Institute for Health & Disability Policy Studies (KU-IHDPS) is looking for adults with disabilities to complete the National Survey on Health and Disability (NSHD). The NSHD is an annual, online survey about your health, quality of life, access to health care services, and the COVID-19 pandemic, as a person with a disability or health condition.

  • Adults aged 18-64 with any type of disability, chronic illness/disease, mental or physical health condition are encouraged to complete the survey
  • The survey should take about 20 minutes to complete
  • Responses are anonymous
  • Survey opens May 2, 2022

Go to:

Whether or not you complete the survey, you can choose to enter a drawing to win one of ten $100 gift cards. If you prefer to take the survey over the phone or have any questions about participating, please call toll-free 1-855-556-6328 (Voice/TTY) or email [email protected].

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FLASH SALE: 10% OFF Annual Conference Registration – This Week ONLY!

NCIL’s schedule of workshops for the 2022 Annual Conference on Independent Living has been posted.

We’re offering 10% off conference registration for one week – Monday, June 13 – Friday, June 17.

Use the discount code: FLASH to apply the discount to your order.

Special Flash Sale / All NCIL Conference Registrations 10% OFF / One Week Only June 13-17 / Enter Code: FLASH
Image: Special Flash Sale / All NCIL Conference Registrations 10% OFF / One Week Only June 13-17 / Enter Code: FLASH

Information Alert: Affordable Access to Broadband

On June 13, the Leadership Conference on Civil and Human Rights will host an educational webinar called “Internet for All: The Affordable Connectivity Program and the Need for Digital Connectivity.” Attendees will hear from experts on the importance of the Affordable Connectivity Program (ACP), which aims to connect all people in the U.S. to affordable, reliable high-speed internet.

White House Announcement on Providing Affordable Access to Broadband


President Biden and Vice President Harris worked with Democrats and Republicans to create the Affordable Connectivity Program (ACP)—the largest high-speed internet affordability program in our nation’s history. Experts estimate that 48 million households—or nearly 40% of households in the country—qualify for the ACP either because their income is at or below 200% of the Federal Poverty Level, or because a member of the household meets one of the other criteria below.

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IL-NET T&TA Center for Independent Living Presents… A National Webinar: The Independent Living Plan – Assisting Consumers in Making an IL Plan

June 21, 2022; 3:00 – 4:30 p.m. Eastern

Register online or reach out to [email protected] 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 panel discussion highlighting the benefits of a consumer-controlled approach to Independent Living Plan creation. Research shows that services are more effective overall when individual consumers set their own goals. We will feature representatives from LIFE Inc., Executive Director, Michelle Crain, and IL Services Coordinator, Robin Reisert.

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Prioritizing HCBS: Updates and Call to Action

The Senate is still working to pass a budget reconciliation package, and they will be deliberating over the next few weeks on the key priorities to include. Funding for Home and Community-Based Services (HCBS) is still a top priority for the Independent Living network and one of the most important issues that NCIL is supporting this year. There is still time for you to take action. This week, Senator Bob Casey, Chair of the U.S. Senate Special Committee on Aging, shared a memo with the Senate Democratic Caucus stressing the urgent need to fund Long-Term Care/Medicaid Home-Based services. Read the memo (PDF).

Take Action!

Contact your Senators and urge them to include HCBS funding in any reconciliation package that may be worked on during the next few weeks! You can call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY) and ask to be connected to your Senators, or you can find your Senators’ contact forms at

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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.”

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Your Input Needed: Take the NCIL Stakeholder Survey by June 4!

Dear IL Friends and Colleagues,

Thank you for the support and patience you have shown over the past several months as NCIL has been going through times of transition. Many of you have reached out to confirm that NCIL matters to you and that you believe it is as relevant as it ever was. Some of you have said it’s no longer the organization for you or the organization you represent.

Non-profit organizations are like people in many ways. We all go through lifecycles. That’s why the board of NCIL decided to undertake a Lifecycles Capacity Assessment for the organization. With the help of Karcsay Consulting Group, we are taking a look at everything that NCIL does and stands for. Our consultant has begun conducting interviews with diverse members, former members, non-members, and other stakeholders, board, and staff. In addition, board members were asked to complete a Lifecycles Capacity Assessment to get their view of NCIL’s current level of maturity.  

We also want to hear from you, our members, partners, and stakeholders. We would appreciate your taking a few minutes to complete a short survey that will give us feedback about what’s important to you about NCIL. Please complete the survey by June 4, 2022.

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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].