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

Healthcare & Community Living

Action Alert: Join Tomorrow’s HCBS Call-In Day!

Congress has approved a budget resolution to clear the way to move a COVID-19 relief package forward, and last week House Committees started introducing their bill text and holding mark-ups. The House Energy and Commerce Committee included a 7.35% FMAP (Federal Medical Assistance Percentage) bump for home and community based services (HCBS) for one year. See more information, including the language.

We know this targeted funding for HCBS is critical for keeping disabled people out of congregate settings where COVID-19 is spreading rapidly. We need to make sure this funding remains in the final package!

Take Action

It is urgent that Congress hears from us! Tomorrow, Wednesday, February 17, NCIL and other disability and aging organizations are holding an HCBS Call-In Day. Contact your Representative and tell them how important it is to include dedicated HCBS funding in the COVID-19 relief package!

  • Call your Representative: Call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY). Ask to be connected to your Representative.
  • You can find your Representative’s contact form at house.gov/representatives
  • You can find your Representative’s phone number, Twitter handle, Facebook page, and other contact information on Contacting Congress.
  • You can use Resistbot to turn texts into faxes, mail, or hand-delivered letters by texting “RESIST” to 50409.

A sample script and sample tweets are below – please feel free to personalize.

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CDC Resources for COVID-19 Vaccination and Underlying Medical Conditions

The Center for Disease Control and Prevention’s High Risk Medical Conditions sub-team – part of the Disproportionately Affected Adult Populations (DAAP) Team of the Vaccine Task Force – has the goal of helping to address COVID-19 vaccine implementation in groups with underlying medical conditions at higher risk for severe illness from COVID-19, which includes many disabled people. They have shared the following COVID-19 resources:

  • COVID-19 Vaccination Toolkits – This webpage contains toolkits for audience-specific toolkits for healthcare teams and community administrators, including community-based organizations. The toolkits contain introduction letters, frequently asked questions, slide decks, fact sheets, and more.  These tools can be adapted to your organization’s scope of work and audience.
  • COVID-19 Toolkit for Older Adults & People at Higher Risk – This webpage contains COVID-19 vaccine and disease guidance and tools to help older adults and people at higher risk and those who serve or care for them.​  This toolkit contains FAQs, checklists, factsheets, posters, social media, PSAs, and more.
  • COVID-19 Vaccine – Recently updated COVID-19 vaccine landing page for consumers and clinicians with materials available in English, Spanish, Chinese, Vietnamese, and Korean.

As a reminder, you can also find updates, information, resources and past alerts about COVID-19 at ncil.org/COVID-19.

Congress Passes COVID-19 Bill; Disability Community Needs Continue to be Unmet

Last night, Congress passed a $900 billion COVID-response package and a $1.4 trillion appropriations bill to fund the government through Fiscal Year (FY) 2021, which ends on September 30. The President is expected to sign it today. You can view the full package, called the Consolidated Appropriations Act, 2021 – CAA (PDF), and additional links can be found below.

Since the last COVID-19 relief package in April, people have been struggling to survive during this health and economic crisis. The assistance provided in this bill is one very small step in providing the much-needed relief people and families have been waiting for. However, it fails to provide the broad, meaningful support that’s needed, and fails to respond to the increasingly dire needs of the disability community.

The overall package includes a 3-year reauthorization of the Money Follows the Person (MFP) program, through September 2023. After a long series of short-term extensions, this is great – if long overdue – news. The package also extends the Spousal Impoverishment protections through September 2023. The Independent Living Program is funded at $116.1 million, which is level funding, for Fiscal Year 2021. The COVID provisions include some important assistance, including: funding for a second round of smaller, $600 stimulus payments to individuals; funding for emergency rental assistance and an extension of the Center for Disease Control and Prevention’s (CDC) eviction moratorium through January 31, 2021; a renewal of supplemental unemployment benefits at $300/week this time (instead of the previous $600/week), and an extension of other unemployment benefits from the CARES Act; funding to the CDC and states for vaccine efforts and COVID-19 testing, tracing, and mitigation programs; and funding for schools, transportation, food assistance, small businesses, and more.

However, many crucial needs were excluded from this bill, including funding for home and community based services, additional Medicaid funding, and nearly all of the other priorities the disability community has been pushing for since the pandemic began 10 months ago.

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Action Alert: Federal Funding and COVID-19 Update

The House of Representatives passed a one-week stopgap spending bill introduced by House Democrats earlier this week. The spending bill would extend funding for the federal government by one week, providing another week for Congress to negotiate details of a larger spending package and avert a government shutdown.

The continuing resolution (CR), H.R. 8900, changes the government funding deadline from December 11, 2020 to December 18, 2020. It also provides that one-week extension for several programs, including the Money Follows the Person program and Home and Community Based Services (HCBS) Spousal Impoverishment protections.

The Senate will likely vote on Friday. Assuming the bill passes, this gives Congress a week to iron out the details of a larger spending package to fund the government for the rest of fiscal year 2021. It is unclear whether that week will be enough time to reach an agreement, but many members of Congress seem optimistic.

The extra week also gives Congress time to iron out the details of a much-needed COVID-19 relief package, which Congressional leaders say will likely be paired with the spending package. Just yesterday, a bipartisan group of lawmakers released an outline of their $908 billion proposal (PDF). However, disagreements between Congressional leaders continue over key provisions, including the dangerous liability shield, and state and local funding.

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Contact Congress Today about COVID-19 Relief!

Congress is once again attempting to find some way to pass much-needed COVID-19 relief. Last week, a bipartisan group of Senators and Representatives unveiled a $908 Billion package for a COVID-19 compromise proposal. Read the overview of that plan (PDF). Shortly after, Senator McConnell announced his own plan. Negotiations between both parties and chambers are ongoing, but importantly, neither of the proposals so far addresses the needs of the disability community.

Our Members of Congress need to hear from us again. They need to hear how critical it is to address the needs of their disabled constituents in this COVID-19 package. In particular, they need to include targeted funding for home and community based services (HCBS) to keep people out of congregate settings where COVID-19 is spreading rapidly; an FMAP increase to ensure Medicaid and state government can meet the needs of their residents; and permanent reauthorization and funding for the Money Follows the Person (MFP) program to help get people out of dangerous congregate settings where COVID-19 is rampant. They also must NOT include the dangerous liability shield included in the Senate’s HEALS Act that would protect businesses (including schools, medical providers, and more) from being held responsible for harm they cause in almost all circumstances. You can see a longer list of priorities in this letter from CCD (PDF), of which NCIL is a member.

TAKE ACTION: Contact your Members of Congress to tell them we need a COVID-19 relief bill, and we need it to address the needs of the disability community!

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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.