the advocacy monitor

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

Information Alert: Court Limits Geographic Scope of Injunction Stopping the Public Charge Rule to NY, CT, and VT

Note: this is an update to yesterday’s Information Alert, “Public Charge Rule Updates”.

Source: Center for Public Representation

Yesterday, the Second Circuit Court of Appeals partially stayed the nationwide temporary injunction issued by a district court in New York last month against the Department of Homeland Security’s discriminatory public charge rule. That decision had halted the rule for the duration of the national public health emergency declared by the Trump Administration. This new decision means the rule is now back in effect nationwide, except in the states of New York, Connecticut, and Vermont.

Read the full article from the Center for Public Representation.

Information Alert: Public Charge Rule Updates

On July 29, the Seventh Circuit Court of Appeals in New York issued a nationwide preliminary injunction against the public charge rule for the duration of the COVID-19 public health emergency. This means the public charge rule cannot go into effect during the pandemic. This decision affirmed the district court’s previous decision. Read more about the public charge rule.

The federal court found that the rule conflicts with federal law – including Section 504 of the Rehabilitation Act – and they cited an amicus brief from a group of disability advocacy groups including NCIL.

Also on July 29, the same court also issued a nationwide preliminary injunction barring enforcement of a companion regulation issued by the State Department. This is the first preliminary injunction on the State Department’s rule, and it extends beyond the COVID-19 public health emergency.

Last week, the Department of Justice moved to stay the nationwide injunction of the public charge rule. However, this is still a huge win, and at this time, the public charge rule is blocked nationwide for the entire COVID-19 public health emergency. We will continue to keep you updated as things move forward.

For more information, see the Protecting Immigrant Families website. More information is also available at the Center for Public Representation’s Public Charge page.

NCIL Mourns the Loss of Deidre Davis Butler

It is with a heavy heart that we inform you of the passing of Deidre Davis Butler, a national and international disability rights leader. Deidre passed away on Saturday, August 8, 2020.

Deidre was an attorney and long-time disability rights advocate. She was a staunch advocate who worked to promote legislative and social change for disabled people. Over her four-decade-long career she helped craft, implement and enforce laws including the Air Carrier Access Act, the Americans with Disabilities Act (ADA), the Civil Rights Act, the Fair Housing Act, and the Individuals with Disabilities Education Act.

[Read more…]

Electronic Visit Verification (EVV) Call to Action

The NCIL EVV Taskforce, formed in Spring 2018, has been hard at work on strategies to reverse the use of surveillance in electronic visit verification (EVV) for Medicaid-funded home care services. Promoted largely by for-profit companies that stand to reap windfall profits from the sales of their systems to states, EVV has been shown to be more harmful than good to people with disabilities and their care providers.

The successes of our communities rely on NCIL members and the broader disability community mobilizing to spread a single message to elected officials. There are two new opportunities you can join right now to help fight against EVV!

Support the COVID-19 Recovery for Seniors and People with Disabilities Act (H.R. 6951 / S. 3740) sponsored by Senators Bob Casey, Sherrod Brown, and Doug Jones in the Senate and Representative Janice Schakowsky

In addition to providing vital support for independent living services for seniors and people with disabilities, S. 3740 and H.R. 6951 specifically recognizes that EVV is a barrier to home and community-based services. The bill would delay implementation of EVV until six months after the end of the national public health emergency.

An additional delay gives the disability and senior communities time to organize around legislative initiatives that will ban the use of geolocation and biometrics in EVV.

Contact your Senators to ask for their support and YES vote on S.3740 COVID-19 Recovery for Seniors and People with Disabilities Act to delay EVV. Contact your Congressional Representative to ask for their support and YES vote on H.R. 6951.

[Read more…]

IL-NET Presents… A Virtual Multi-Day Training: Financial Management for Centers for Independent Living – Regulations and Beyond

We are excited to announce that we’re taking our popular on-location financial management training online! You can save on travel costs and access all of the critical information on financial management from the comfort and safety of your own office or home!

Are you trying to keep up with all of the new guidance and regulations for CILs? We can help!

The IL-NET T&TA Center for Centers for Independent Living is offering an updated version of our popular financial management workshop to give your CIL the latest information on compliance and financial management practices. Whether you are new to nonprofit accounting or are looking to bolster your Center’s financial policies and procedures, you will learn exactly what you need to do to strengthen your Center, effectively manage finances, and ensure compliance with federal regulations. Led by John Heveron, a certified CPA with over 40 years working with non-profits and CILs, and Paula McElwee, ILRU’s Technical Assistance Coordinator, this workshop will give you the skills and resources that are essential to sound financial management in a thriving Center for Independent Living.

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

Visit the training web page to read about the presenters, learning objectives, agenda, and target audience.

[Read more…]

Join Tuesday’s Call-In Day for HCBS in the Next COVID-19 Package!

Tomorrow (Tuesday, August 4), NCIL is joining other disability organizations to host a disability community call-in day to urge the Senate to include funding for home and community-based services (HCBS) in the coronavirus relief bill being negotiated. 

Targeted funding for HCBS is critical to keeping disabled people out of congregate settings where COVID-19 is spreading rapidly. Last week the Senate introduced their new COVID-19 relief package, the HEALS Act. Unlike the HEROES Act, which the House passed back in May, the HEALS Act does not include ANY HCBS funding. Read more in last week’s alert


Contact your Senators to tell them #WhatWeNeed is #HCBS funding! Even if you have already contacted your Senators, they need to hear from you again. Make sure to tell them why Home and Community Based Services (HCBS) funding is critical, and that it MUST be included in the next COVID-19 package! It’s urgent that they hear from as many of us as possible, as soon as possible, to ensure that dedicated HCBS funding gets included in the final bill.

  • Participate in Tuesday’s Call-In Day! Find out more information at the Facebook event. RSVP and share widely!
  • Email and tweet your Senators directly.
  • Call your Senators by calling the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY) and asking to be connected to your Senators.
  • Get your Senators’ direct phone number, email and social media handles at

A sample script and sample tweets are below. See additional sample materials.

Please also consider contacting Senate leadership and Senate Finance Committee leadership as well. 

[Read more…]

The Senate’s HEALS Act Does NOT Meet Our Needs: Take Action Today!

On Monday, the Senate introduced the Health, Economic Assistance, Liability Protection and Schools (HEALS) Act. This new COVID-19 relief package was released as a series of bills. See more information about each bill. As a reminder, the House passed the HEROES Act back in May.

The HEALS Act fails to meet the urgent needs of the disability community. It does not include ANY of the priorities we have been urging our members of Congress to address, like targeted funding for home and community based services (HCBS) – which are critical to keeping disabled people out of congregate settings where COVID-19 is spreading rapidly.

It does, however, include a dangerous provision that would give businesses – including schools and medical providers – immunity from being held liable for harm they cause in almost all circumstances. Plus, it specifically shields employers and people who own, lease, or operate public accommodations from violations of the Americans with Disabilities Act. The liability relief provision removes accountability and is solely about protecting businesses and profits; not at all about protecting people. It puts the safety, rights, and lives of everyone at risk.

[Read more…]

NCIL Mourns the Loss of Representative John Lewis

We are greatly saddened by the loss of Representative John Lewis, who died after a battle with cancer at the age of 80. Representative Lewis was a hero of the civil rights movement who dedicated his life to fighting for justice, including during his over three decades in Congress. There he was seen as a sort of moral authority, becoming known as “the conscience of the Congress.”

Representative Lewis spent his whole life fighting to make America a country that truly belonged to everyone. Well-known for his activism around voting rights, he was a staunch advocate for many important issues ranging from healthcare to immigration to disability rights. He was a lifelong activist, having been arrested over 40 times throughout his life, and frequently encouraging people to make “good trouble” in the pursuit of justice.

Representative Lewis leaves behind a legacy of justice-seeking, of love, and of honor. NCIL joins the broader civil and human rights community, and the entire nation, in mourning the loss of this true hero. We commit to continuing the work for justice and equity. And we commit to working to make this country, and our community, one that truly belongs to everyone.

NCIL Statement on Michael Hickson

On the eve of the thirtieth anniversary of the Americans with Disabilities Act (ADA) and in the midst of an unprecedented global pandemic, the National Council on Independent Living (NCIL) mourns the deaths of those who have died as a result of the denial of medical services, braces itself for more casualties to come, and condemns the inhumane practice of rationing healthcare that, although it has always been a concern for the disability community, has become an all-too-grim reality during this era of COVID-19.

The recent demise in Austin, TX, of Michael Hickson, a Black father of five who lived as the result of a cardiac incident with both spinal cord and traumatic brain injuries, has spearheaded a necessary conversation regarding the value placed upon life in the US. Hickson, who was taken to the hospital as a result of contracting COVID-19 in the nursing facility where he resided, was denied medical care, food, and water, ultimately starving to death, alone, on June 11th, 2020. The decision to deny Mr. Hickson treatment was made by his medical team and his court-appointed guardian and against the wishes of his family, who weren’t notified of Mr. Hickson’s death until a day after he passed away.

Michael Hickson’s life mattered – to his wife, to his children, and to his community. It should have mattered to the medical professionals charged to care for him. It didn’t – audio recordings of Mr. Hickson’s medical team clearly reflect that, because of his disabilities, they felt Mr. Hickson would be a waste of treatment. As states throughout the US move forward with initiatives intended to prioritize who during the pandemic will get care and rationalize about who will be denied, people with disabilities – who are disproportionately being impacted by COVID-19 at alarming rates – are left to grapple with the grim reality that healthcare settings, which are intended to provide care, are both a system of inequity and, as is the case with Mr. Hickson, an instrument of death.

The disability community deserves better, Michael Hickson and his family deserved better, and because of this, NCIL intends to file a complaint with the Office of Civil Rights (OCR) that will entail a request that they conduct a thorough investigation into the circumstances – and the myriad ADA violations that occurred – leading up to Mr. Hickson’s death. NCIL also seeks out legislative and organizational partners in the interest of joining forces on behalf of the disability community to ensure that, not only is the unfortunate trend towards medical rationing curtailed during the pandemic, it is seen for what it is by the general public: an unethical and barbaric practice that has no place in the US, moving forward.

Final Update on NCIL’s Virtual Hill Day: Virtual March, Rally and Advocacy Priorities & Talking Points Guide

We hope you are getting excited for this year’s Virtual Hill Day, which is coming up quickly! As a reminder, the Virtual Hill Day will be on Tuesday, July 21, 2020.

Earlier this week, the Co-Chairs of several key NCIL Legislative and Advocacy Subcommittees hosted NCIL’s annual Policy Briefing to provide everyone with key information in preparation for next week’s Virtual Hill visits.

We want to provide you with some additional key information heading into next week!

Virtual March

Our Virtual Hill Day includes a fun, new virtual format for our Annual March! To participate, make a homemade sign with your message on it and send us a picture. You can use anything from poster board to a regular sheet of paper. Just make sure your text is BOLD so we can read your message. You can use any medium. Send your photo to and include a short description of your photo (30 words or less). We’ll post the photos we receive on the NCIL Virtual March page.

Virtual Rally

Our Virtual Hill Day also includes a fun, new virtual format for our Annual Rally! We have an incredible line-up of members of Congress and advocates who will be providing remarks to inform and energize you before you head into your Hill meetings. You can tune in to the Rally at 11:00 a.m. Eastern at the NCIL Virtual Rally page. To allow for the greatest amount of flexibility around your meeting schedules, the Rally video will be archived and available throughout the conference. ASL interpretation and CART will be provided.

Advocacy Priorities & Talking Points

Each of NCIL’s Legislative & Advocacy Subcommittees have written up summaries of their key priorities and talking points to help prepare you for your Virtual Hill Visits!

Advocacy Priorities & Talking Points:

As a reminder, the Virtual Day on the Hill is open to the public. We encourage everyone to join us for the Virtual March, Rally, and Hill Visits! This year’s Virtual Hill Visits have the potential to make a huge impact. Congress returns from recess on Monday, July 20, and our Virtual Hill Day will be a critical time to urge our members of Congress to take action and to prioritize the needs of their disabled constituents. We hope you will join us!

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