the advocacy monitor

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

Information About NCIL’s Virtual Hill Day: Start Scheduling Your Meetings!

This year, NCIL’s Annual Hill Day will be on Tuesday, July 21, 2020. Like the rest of the Annual Conference, it will be completely virtual!

Part of each Annual Hill Day is the Hill Visits. These are meetings with the Senators and Representatives in Congress who represent you. A key part of successful Hill Visits is planning ahead – and this is just as important for a Virtual Hill Day!

We will be announcing the date for our annual Legislative and Advocacy (L&A) briefing soon. At this briefing, the Chairs of key NCIL L&A Subcommittees will discuss NCIL’s legislative priorities. They will also provide talking points to prepare you for your meetings. This briefing will be archived and available afterwards.

NCIL will be providing additional details about the Virtual Hill Day as they become available. This also includes a fun, new, virtual format for our Annual Rally!

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Good News on Hospital Visitor Policies!

Disabled people have been facing discriminatory “no visitor” policies in hospitals across the country. These policies are in place to keep people safe during the COVID-19 pandemic, but they have prevented people from receiving critical support and assistance from family members, friends, support workers, or others. Accommodations to these policies are required by law, but states and hospitals across the country have been refusing to make such accommodations and abide by the law.

The first federal complaint (PDF) challenging these policies was filed in Connecticut by Independence Northwest: Center for Independent Living of Northwest CT, Disability Rights Connecticut, CommunicationFIRST, the Arc of Connecticut, Center for Public Representation, and the Arc of the US. Last week, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced a resolution.

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Submit Comments on Proposed Voluntary Voting System Guidelines 2.0 by Monday!

The U.S. Election Assistance Commission (EAC) published proposed Voluntary Voting System Guidelines 2.0 (VVSG 2.0) for public comment. The VVSG are a set of specifications and requirements for voting systems that relate to things like basic functionality, accessibility, and security.

VVSG 2.0 proposes new national-level voting system standards, and upon review, it is clear that the changes in this version will harm disabled voters. Disabled voters are already facing an even greater risk of disenfranchisement as a result of the pandemic; we cannot allow standards to be put in place that would increase that risk. It is critical that we provide feedback!

Take Action: Submit Comments (Draft Provided)

NCIL has worked with a coalition of other disability rights organizations to draft comments. Many of our organizations, including NCIL, will also be submitting these comments individually. Please feel free to review these comments and use them as written or personalize them to create your own. You can also submit a simple comment saying you support NCIL’s comments.

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Emergency Attendant Survey

The COVID-19 pandemic has uncovered significant gaps in the home and community-based services (HCBS) system, including a nationwide need for Emergency Attendant / Direct Service Professional Registries and Backup Programs. NCIL and APRIL are partnering on surveying Centers for Independent Living (CILs) across the country to create a database of existing resources in this area so we can identify gaps and work to address them moving forward.

Please fill out this short Emergency Attendant Survey to help us gauge your CIL’s current status. This survey only takes 1-2 minutes complete. We are seeking responses from every Center for Independent Living in the country. Responding CILs will be entered into a drawing to receive a $50 Amazon gift card!

Gift card drawing rules: One (1) $50.00 Amazon gift card will be awarded to a Center for Independent Living that submits a complete survey response. Individuals and non-CIL entities are not eligible to win. The winner will be chosen by a random selection of survey respondents. Survey drawing will be held after all responses have been received or by July 31, 2020, whichever comes first. The winner of the drawing will be notified by email at the email address provided in their survey response.

Op-Ed: Why Social Workers Should Oppose Assisted Suicide

By Jessica Rodgers

As a social work intern with the Independent Living Center of the Hudson Valley, I advocate for all individuals to live as independently as possible in the community. I also oppose the dangerous assisted suicide legislation that continues to be pushed upon the people of New York.

For decades, opponents have warned about the dangers this sort of legislation holds for the disabled community. Despite supposed safeguards and attempts on the part of proponents to ease concerns, the world has hurtled along exactly as disability-rights advocates have feared. One need look no further than Switzerland where those willing to pay for it can buy a designer suicide. Belgium has perhaps gone the farthest of all by allowing children the option to kill themselves and not differentiating between mental distress and physical illness. A PBS special even followed a Belgian physician as he made a home visit to give one of his patients a lethal injection. Her diagnosis? Depression.

For the old, the sick, and the disabled — particularly those in poverty — the “right to die” may, sooner rather than later, become the “duty to die.”

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NCIL Statement on Activism

The National Council on Independent Living (NCIL) is saddened and angry that, just over two weeks after releasing a statement on police violence, the country is once again mourning the murder of another victim, George Floyd.

NCIL recognizes that, in the midst of so much inequity and injustice that has only been further revealed by Mr. Floyd’s murder, more people than ever – including those of with disabilities – are looking for ways to make their voices heard in the interest of both breaking the cycle of police violence and effecting systemic change. NCIL acknowledges that, although virtual and other means of non-in person activism have often been dismissed as “less than” within the disability community, all modes of advocacy have merit and, in many instances, actions taken via social media have resulted in positive outcomes, not just for people with disabilities, but for all.

With that in mind, NCIL’s Taskforce on Anti-Racism and Equity would like to amplify the resources and guides already in existence that are intended to support individuals with disabilities with in engaging in activism from both home and in-person, including the following.

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Registration Now Open for NCIL’s 2020 Annual Conference!

Conference Logo: Evolution of our Revolution - 2020 Annual Conference on Independent Living. Graphic features a speech bubble and heart icon.

July 20 – August 7, 2020

Registration is now open for NCIL’s 2020 Annual Conference on Independent Living!

We are spreading our conference events out a bit to accommodate the realities of virtual events and participation from home. The week of July 20 will feature kick-off events and plenaries, followed by two weeks of additional workshops and other events.

We have significantly reduced the registration rates for this virtual conference. Despite cutting the rates, we’ve also increased the number of workshops and sessions we’re offering because we’re no longer constrained by the number of meeting rooms we have available at the hotel. That means more content for less money!

We have released the conference agenda and other details over the past week. We will be releasing the full workshop schedule and additional updates over the next few weeks.

NCIL remains fully committed to an event that is safe and accessible to all. We know there will be some access challenges to a virtual conference, just as there are access challenges to in-person conferences. We are already busy coordinating accommodations and support, and are ready to respond to your accommodation requests and feedback in order to hold the most accessible virtual conference possible. Accommodations can be requested when you register and you are always welcome to submit questions to

All registrations received and paid by June 16, 2020 are eligible for the Early Bird registration rates.

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Nominate Deserving Youth with Disabilities for the Diana Viets Memorial Award!

May 27, 2020

Dear NCIL Member:

As you know, NCIL’s Annual Conference on Independent Living is rapidly approaching. This year, NCIL will again be honoring individuals from the Independent Living field with various awards for their dedication to the Independent Living and disability rights movements.

One of these awards is the Diana Viets Memorial Award. Diana was an energetic young woman with a disability who dedicated her life to empowering young people with disabilities to take an active role in the Independent Living movement. Through her work at a Center for Independent Living and the NCIL Board, Diana touched the lives of many youth with disabilities. NCIL wants to acknowledge, honor, and encourage our young leaders who are promoting disability pride, spreading Independent Living philosophy, and fostering the active participation of youth with disabilities in the disability rights movement.

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Memorandum: 2020 Regional Advocacy Awards

Each year, NCIL recognizes individuals and / or organizations for outstanding advocacy efforts. NCIL encourages you to nominate someone in your region who you believe is deserving of this award. Please take a few minutes to complete the nomination form by June 10, 2020.

Purpose of the NCIL regional advocacy award: To recognize individuals or groups / organizations within each region for outstanding systems advocacy efforts consistent with independent living goals and philosophy at a national, state, or local level.

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NCIL Mourns the Loss of Stacey Park

It is with a heavy heart that we mourn the passing of activist and organizer Stacey Park. Stacey passed away from surgical complications on May 19, 2020, on her 33rd birthday.

Originally from North Carolina, Stacey served on the North Carolina Statewide Independent Living Council (SILC) and was a former American Association of People with Disabilities (AAPD) intern. She was a fixture of disability activism in the Bay Area after moving there in 2010. A co-founder of the Disability Justice Culture Club, Stacey coordinated direct aid to disabled people and other marginalized groups during emergencies like the 2019 PG&E power shutoffs in the Bay Area and the current COVID-19 pandemic. Stacey’s activism was truly intersectional in nature, addressing overlapping systems of oppression and all facets of a human being, including disability, race, ethnicity, gender, sexual orientation, and immigration status. Her commitment to disability justice as a queer disabled woman of color was unparalleled.

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