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

Healthcare & Community Living

COVID-19 Updates

COVID-19 rates are once again surging across the country. Infection rates and hospitalizations are rising. The US has surpassed 11 million cases and has reached nearly 250,000 deaths. Cases and deaths in congregate settings are, once again, rising disproportionately, with a recent report finding COVID-19 cases in nursing facilities have risen fourfold in many states in this latest surge; and we know people in other congregate settings are facing the same dire situation.

Congress is still stalled on their COVID-19 relief efforts. While both the House and the Senate listed passing another COVID-19 relief bill as a post-election priority, major disagreements on how to move forward remain. With the election behind us, we will need to ramp up our advocacy efforts once again to get Congress to pass the pandemic relief we so desperately need. 

President-elect Biden and Vice President-elect Harris, however, have gotten to work. Last week they named the members of their coronavirus task force, who will work to develop a plan for fighting COVID-19 under the new Administration. See the list of members and brief descriptions. They also launched their transition website, buildbackbetter.com, which includes an outline of their plan to beat COVID

Another announcement that came out last week is Pfizer and BioNTech’s news that their vaccine candidate is showing 90% effectiveness after an initial analysis. Then, this week, Moderna also announced their vaccine is over 90% effective. Both companies expect to be ready to apply to the Food and Drug Administration (FDA) for emergency use authorization by the end of the month. Per their announcements, Pfizer expects to have 50 million doses available globally by the end of the year (each regimen requires two doses) and up to 1.3 billion doses available during 2021; Moderna expects to have 20 million doses ready to ship in the US by the end of 2020 and estimates it can make 500 million to 1 billion doses next year. While this is great news, experts are cautioning that it will still take many months before the vaccine is widely available, and there are still some questions remaining, including how long immune protection lasts, how effective it will be for different groups of people (including immunocompromised people), and how distribution will play out. That said, this is incredibly promising, and there are currently two other vaccine candidates still in trials that expect to have results as early as next month.

We will continue to keep you updated as new information becomes available or as advocacy is needed.

Information Alert: Affordable Care Act Heads Back to Supreme Court Today

Today the Supreme Court will hear oral arguments in the lawsuit seeking to invalidate the Affordable Care Act (ACA). This case, California vs. Texas, argues that the ACA’s individual mandate is unconstitutional and puts the entire ACA in jeopardy of being struck down. 

NCIL is closely following this. The ACA has been vital to millions of people across the country, including the disability community. Because of that, NCIL has consistently fought efforts to weaken and get rid of the ACA. NCIL, along with nearly 20 other national disability rights organizations, filed an amicus brief opposing these efforts to invalidate the ACA. In it, we argued how the ACA has expanded healthcare access and coverage for people with disabilities and society as a whole, including how the ACA’s changes to Medicaid have increased and improved access to healthcare and long term services and supports (LTSS). View the amicus brief (PDF).

Striking down the ACA would be devastating, especially for people with disabilities. And the thought of taking healthcare away from millions of people is even more unconscionable as we deal with the devastation resulting from the COVID-19 pandemic. That said, we do not expect to have a ruling for several months, and we plan to continue fighting. We will continue updating you with information as it becomes available, as well as ways that you can take action. 

In the meantime, you can follow some of the today’s action and join in on social media with the hashtags #ProtectOurCare and #SaveTheACA. Additionally we have extended our deadline to share your stories about how the ACA has helped you or how overturning the ACA would be harmful. Please share your stories with by using this online form or emailing comments@ncil.org. We are extending the deadline for this request to Sunday, November 15, 2020.

See our previous alert for information about some of the ways the ACA has helped people.

Deadline Extended to Share Your Story and Help Us Save the Affordable Care Act!

Earlier this week, the Senate voted to confirm Amy Coney Barrett’s appointment to the U.S. Supreme Court. NCIL and over 50 other national, state, and local disability rights organizations sent a letter (PDF) urging the Senate to oppose her nomination. NCIL opposed her nomination due to her history of decisions that have harmed the disability community, and in particular her vocal opposition to the Affordable Care Act (ACA).

Despite her confirmation, NCIL will continue to fight to save the ACA. You may remember that NCIL, along with several other disability organizations, filed an amicus brief (PDF) in the court case that will soon be heard by the Supreme Court, and we will continue to advocate. The disability community played a huge role in saving the ACA in 2017, and we must do the same again. We will continue to fight, and we need your help. 

Share Your Story

We need your stories of how the ACA has helped you, and how overturning the ACA would be harmful. Please share your stories with by using this online form or emailing comments@ncil.org. We are extending the deadline for this request to Sunday, November 15, 2020. See below for information about some of the ways the ACA has helped people.

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Join Us: A Disability Rights Forum and Launch of the NAB’s Refreshed Six Foundational Principles

Source: National Advisory Board

Thirteen years ago, the National Advisory Board (NAB) on Improving Health Care Services for Older Adults and People with Disabilities launched our groundbreaking Six Foundational Principles, affirming the rights of older adults and people with disabilities to live at home, on their own terms, with the health and community support they need. Together with advocates around the country, we use these Principles to inform lawmakers and health care leaders about the needs and preferences of people with disabilities and older adults.  The Principles convey the importance of equitable access to health care and the critical need for home and community-based services to policy makers, regulators, and industry leaders.  

Now, as we look back, celebrate what we’ve accomplished, and recognize the 30th anniversary of the ADA, we are also reminded of the collective work ahead of us in making our ideals of inclusion and equality a reality. During this forum we will address the disparities laid bare by COVID-19, discuss our path forward, and lay the groundwork for continued advances in the movement.   

Join us on October 30th from 1:00pm to 4:30pm Eastern for the launch of the NAB’s updated Six Foundational Principles and interactive discussions with community leaders on the history and future of disability rights.  

Register for the event here! 

We are excited to have outstanding disability rights leaders with us to talk about home and community-based services (HCBS), employment, mental health, technology accessibility, and health disparities in COVID-19. Speakers include:

  • Lex Frieden, Architect of the ADA and Convener of the NAB
  • Julia Bascom, Executive Director, Autistic Self Advocacy Network (ASAN)
  • Kelly Buckland, Executive Director, National Council on Independent Living (NCIL)
  • Crosby Cromwell, Disability Consultant
  • Paul Gionfriddo, President and CEO, Mental Health America (MHA)
  • Jeff Hughes, Executive Director, Progressive Independence
  • Andy Imparato, Executive Director, Disability Rights California (DRC)
  • Joseph Jones, Executive Director, The Harkin Institute
  • Anil Lewis, Executive Director, National Federation of the Blind (NFB)
  • Christina Mills, Executive Director, California Foundation for Independent Living Centers (CFILC)
  • Cynthia Overton, Director of Tech Workplace Initiatives, Kapor Center
  • Maria Town, President and CEO, American Association of People with Disabilities (AAPD)
  • John Tschida, Executive Director at the Association of University Centers on Disabilities (AUCD)
  • Dior Vargas, Queer Latina Feminist Mental Health Activist

Please share this invite with your colleagues, legislators, friends, and family on Facebook and Twitter, and use #ADA30 and #DFI6Principles to share your thoughts and questions on social media. We look forward to connecting and discussing with you!

National Appendix K / Retainer Payment Sign-on Letter Opportunity

The co-chairs of the Coalition for Citizens with Disabilities LTSS Task Force and the Disability and Aging Collaborative have put together a sign-on letter to CMS Administrator Seema Verma urging flexibilities around Appendix K waivers and retainer payments. The letter is open to national, state, and local organizations. 

 If the link is not accessible to you, you can email lindsay@ncil.org with the name of your organization (exactly as you want it listed on the letter).

Signatures are due Friday, October 23, 2020 at 10:00 a.m. Eastern.

Join Monday’s National Call-in Day on Supreme Court Nominee Judge Barrett!

Earlier this week, we sent an alert about Judge Amy Coney Barrett’s nomination with several ways to take action.

On Monday, October 12, NCIL is joining other disability organizations to coordinate a national call-in date to oppose the confirmation of Judge Amy Coney Barrett to the U.S. Supreme Court. As we said in our previous alert, Judge Barrett’s opinions on a number of issues are damaging to disability rights, and her appointment to the U.S. Supreme Court would threaten the rights and lives of Americans with disabilities. Her hostility toward the Affordable Care Act (ACA) is a particular threat, since the ACA has been vital to millions of people across the country, including the disability community. If Judge Barrett is confirmed, losing the ACA is far more likely.

Join the Call-In Day!

  • Join and share the event page on Facebook
  • You can reach both of your Senators by calling the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY) and asking to be connected to your Senator.
  • You can find your Senators’ contact forms at senate.gov.
  • You can find your Senators’ Twitter handles, Facebook pages, and more on Contacting Congress.
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Help Us Fight the Supreme Court Nomination and Save the Affordable Care Act!

Judge Amy Coney Barrett has been nominated to fill Justice Ruth Bader Ginsburg’s vacant seat on the United States Supreme Court. Senate Majority Leader Mitch McConnell has stated that the Senate will hastily move forward with her confirmation hearings in mid-October, with a vote planned shortly after. Judge Barrett’s opinions on a number of issues are damaging to disability rights, and her appointment to the U.S. Supreme Court would threaten the rights and lives of Americans with disabilities. NCIL strongly opposes her nomination.

We, along with over 50 other national, state, and local disability rights organizations have sent a letter (PDF) urging the Senate to oppose her nomination. We are continuing to work with these organizations and others to oppose her nomination, and now we need your help.

Take Action!

The Supreme Court is scheduled to hear arguments in the lawsuit seeking to invalidate the Affordable Care Act (ACA) on November 10. The ACA has been vital to millions of people across the country, including the disability community. Judge Barrett’s vocal opposition to the law is highly concerning, and her appointment to the Supreme Court makes the loss of the ACA far more likely.

1. Share your story: We need your stories of how the ACA has helped you, and how overturning the ACA would be harmful. Please share with us how the Affordable Care Act has helped you, or how losing the ACA would be harmful. You can share your stories with us using our online form or at comments@ncil.org. Because this is moving so quickly, we are requesting this information by Wednesday, October 14, 2020. Thank you for your help!

2. Contact your Senator: You can call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY) and ask to be connected to your Senators. You can find your Senators’ contact forms at senate.gov. You can find your Senators’ Twitter handles, Facebook pages, and more on Contacting Congress.

Sample script: Hi, my name is (NAME), and I’m from (CITY, STATE). I am (calling / writing) to urge the Senate to reject the nomination of Judge Amy Coney Barrett, the President’s Supreme Court Nominee. Judge Barrett has a history of decisions that are concerning to me as a disabled person. Moreover, Congress should not act on any nomination until Congress has passed, and the President has signed, a COVID-19 relief bill. There is far too much at stake to rush this important decision. Please reject Judge Barret’s nomination. (Your name)

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Request for Information: COVID-19 and Congregate Settings

We need your help. The COVID-19 pandemic has hit our community hard, and especially people in congregate settings. These settings include places like psychiatric hospitals, intermediate care facilities, nursing facilities, developmental centers, group homes, and others. Many of our people are still trapped in these settings even as the pandemic has highlighted their dangers.

As we fight to keep everyone safe, we are also preparing for increased infections in the coming months. We are considering filing a complaint about how the rights of many disabled people in congregate settings are being violated right now. We need to know what has – and has not – been working in these settings around the country.

If you live in a congregate setting, or if someone close to you (like a family member or friend) does, we want to hear from you.

You can share this information with us using any of the methods below:

Please provide at least one way to contact you so we can follow up if we need more information. Some of the information we receive will be used if we move forward with the complaint. We will not share your name or contact information without your permission.

We request that you please share this information with us by Friday, October 16. Thank you.

Survey Question Examples: We are especially interested in answers to the following questions. You can answer any or all of these questions. These are just examples of the type of information we are looking for. If you have information to share with us that is not included in these questions, please do.

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Contact your Senators Today about COVID-19 Relief!

Last week the Senate’s “skinny” COVID-19 relief package, the Delivering Immediate Relief to America’s Families, Schools and Small Businesses Act (PDF), failed to advance. This was considered their “skinny” package, because it is a scaled-back version of the HEALS Act that was introduced in July. You can read more about the HEALS Act in our previous alert.

The next two weeks are critical for passing real, comprehensive COVID-19 relief. If the Congress doesn’t reach an agreement this month, it will likely delay any significant relief until after the election, and possibly even until January. That is unacceptable.

Even if you’ve contacted your Senators already, they need to hear from us again today! They need to hear from their constituents how important it is that they work to pass real, comprehensive relief now. And, they need to hear how critical it is to address the disability community’s needs in this COVID-19 package. They need to hear about all our priorities, but especially about the need for funding for home and community based services (HCBS). You can see a full list of priorities in this letter from CCD (PDF), of which NCIL is a member. NCIL also worked with other disability organizations to highlight our most critical priorities (PDF).

TAKE ACTION: Contact your Senators to tell them to #GetBackToWork on a bill that addresses our needs. Remind that that #WhatWeNeed is #HCBS funding!

  • Call your Senators. Call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY). Ask to be connected to your Senators.
  • You can find your Senators’ contact forms at senate.gov.
  • You can find your Senators’ direct phone numbers, Twitter handles, Facebook pages, and more on Contacting Congress.
  • You can use Resistbot to turn texts into faxes by texting “RESIST” to 50409.
  • Also consider contacting Senate Majority Leader Mitch McConnell and Minority Leader Chuck Schumer. You can use the methods above or tweet at them. McConnell – @SenateMajLdr; Schumer – @SenSchumer.

A sample script is below. Please feel free to personalize.

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New COVID-19 Relief Package: Contact your Senators Today!

The Senate has introduced another COVID-19 relief package called the Delivering Immediate Relief to America’s Families, Schools and Small Businesses Act (PDF). This is considered their “skinny” package, because it is a scaled-back version of the HEALS Act that was introduced in July. You can read more about the HEALS Act in our previous alert. Like the HEALS Act, this new package does not meet the needs of the disability community. It also includes the same dangerous liability shield. This is the piece that would undermine the Americans with Disabilities Act and give businesses immunity for harm they cause in almost all circumstances.

The Senate voted and failed to advance their bill today, by a vote of 52-47. Our Senators need to hear from us again now! They need to hear about the importance of addressing the disability community’s needs in their COVID-19 response. They need to hear about all of our priorities, but especially about the need for funding for home and community based services (HCBS). You can see a full list of priorities in this letter from CCD (PDF), of which NCIL is a member. NCIL also worked with other disability organizations to highlight our most critical priorities (PDF).


TAKE ACTION: Contact your Senators to tell them to #GetBackToWork on a bill that addresses the our needs. Remind that that #WhatWeNeed is #HCBS funding!

  • Call your Senators. Call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY). Ask to be connected to your Senators.
  • You can find your Senators’ contact forms at senate.gov.
  • You can find your Senators’ direct phone numbers, Twitter handles, Facebook pages, and more on Contacting Congress.
  • You can use Resistbot to turn texts into faxes by texting “RESIST” to 50409.
  • Also consider contacting Senate Majority Leader Mitch McConnell and Minority Leader Chuck Schumer. You can use the methods above or tweet at them. McConnell – @SenateMajLdr; Schumer – @SenSchumer.

A sample script is below. Please feel free to personalize.

[Read more…]